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2014 Annual Report FILLING IN THE FUTURE CINCINNATI CHILDREN S HOSPITAL MEDICAL CENTER ANNUAL REPORT 2014

Cincinnati Children's 2014 Annual Report: Filling in the Future

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Filling in the Future means going outside the lines of traditional thinking. It means inspiring, imagining, creating and sharing new ideas with the world. That's what we're doing at Cincinnati Children's.

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  • 2014 Annua l Repor t3333 Burnet Avenue Cincinnati, OH 45229-3026

    www.cincinnatichildrens.org

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    ChildrensHospital_AnnualReport_Covers-Spine_FA.indd 1 12/5/14 9:24 AM

  • THANKS FOR YOUR INSPIRATION!Our heartfelt thanks to the many children of our community whocontributed their beautiful ideas, inspiration and artwork to thisannual report:

    Patients at Cincinnati Childrens Childrens for Children daycare center Third-grade art class at our partner school,

    Rockdale Academy, Cincinnati, OH Fifth-grade Advanced and Creative Talents classes at

    Mason Intermediate School, Mason, OH

    Due to space limitations, we were not able to include all the artworkwe received. To see all the drawings, go online to:

    http://www.pinterest.com/cincychildrens/children-contribute-art-to-2014-annual-report/

    Produced byDepartment of Marketing and Communications

    Cincinnati Childrens Hospital Medical Center

    Jane Garvey, Vice President

    WritersMary Silva, Managing EditorTimothy Bonfi eldTom ONeillSarah Stankorb

    PhotographyTine HoffmanJonathan Willis

    Additional photos from theCincinnati Childrens archive

    DesignPROCLAMATION

    PRODUCTION CREDITS

    ChildrensHospital_AnnualReport_Covers-Spine_FA.indd 2 12/9/14 12:22 PM

  • TABLE OF CONTENTS

    About this ReportCEO and Board MessageIn Our CommunityHelping children with severe asthma stay healthy

    TIP program transforms the lives of neglected and abused children

    Across the Country and Around the GlobeProjects in Africa transform the care of sickle cell at its source

    Training doctors for a world view

    Accelerating InnovationOur directions in genomics will transform both research and care

    Our DonorsOur LeadershipFinancials

    PAGE 1

    PAGE 3

    PAGE 6PAGE 10

    PAGE 18PAGE 28

    PAGE 34

    PAGE 44

    PAGE 50

    PAGE 54

  • Filling in the future means going outside the lines of traditional thinking. It

    means inspiring, imagining, creating and sharing new ideas with the world. Thats

    what were doing at Cincinnati Childrens. In the pages ahead, youll read of our

    breakthrough research and treatments, and the inspired ideas that are helping

    change the outcome for children here and around the world.

    The drawings in this book were created by children inside and outside our hospital

    community. Many of them have been patients here. These drawings are their

    visions of what makes them happy and healthy, and how they see the future. We

    sprinkled them throughout, and left some to be colored in, to remind us that we

    have the power to change, create, envision and fill in a better future.

    If youre inspired by what you see in these pages, please take a moment to help

    us fill in the future by donating through our Change the Outcome Campaign. An

    insert in this book will give you more details. Thank you for your supportand

    enjoy what lies ahead.

    AT CINCINNATI CHILDRENS,WERE FILLING IN THE FUTURE. FOR CHILDREN,FOR FAMILIES, FOR MEDICINE, FOR THE WORLD.

    PAGE 1CINCINNATI CHILDRENS

  • Dear Friends,One of the many joys of working in a pediatric medical centeris the opportunity to see the world through the eyes of a child.

    The children we care for even those struggling with enormous challenges have a resilience and an optimism that

    inspire and motivate us every day.

    This years report is all about that optimism. In these pages youll find artwork created by our children patients,

    students in our partner schools, children in our daycare center. All of them have contributed their personal, inventive

    and colorful perspectives on how they see the world, and the future.

    We titled this report Filling in the Future because the clinical advances and research discoveries we describe here are

    helping to solve the problems and complete the picture for countless childhood diseases and conditions. Often, our

    doctors and scientists begin with nothing more than a fuzzy, bewildering outline of a medical question. But through

    remarkable teamwork, skill and perseverance, they gradually add the detail and definition that clarifies, illustrates,

    and often, results in an answer.

    This report showcases some of the many ways in which our people are filling in the future. You will read about the

    exceptional care they provide, of course. But you will also learn that exceptional care is only the beginning our

    doctors and scientists take what they learn in caring for patients back to their laboratories to find even better ways.

    Whether it is using what they learn here to improve life for children overseas, or developing a genetic test that allows

    us to predict and prepare for future complications, they continually strive to complete the picture of a better future.

    This year, we launched a campaign that will allow us to continue changing the outcome for our patients. It is the

    largest fundraising effort in Cincinnati Childrens history with a goal of $250 million. Weve already received major

    commitments from corporations, foundations and individuals. The dollars raised from the campaign will enable

    Cincinnati Childrens to fulfill its vision to be the leader in improving child health by focusing on two primary areas:

    elping children in our region ecome the healthiest in the nation. eyond pro iding care for diseaseand injury, we work with community partners to keep children healthy through pre ention and wellnessinitiati es. Our goal is achie ing optimal health and potential for e ery child.

    ccelerating disco ery through the work of our esearch Foundation. e know that research dri eshealthcare inno ation, which leads to new disco eries and answers to the world s most comple pediatricdiseases. Our companion esearch nnual eport details our latest disco eries.

    We are grateful for the many ways you show support for Cincinnati Childrens. Your partnership gives us confidence

    that well be able to fill in the future for more children and families throughout reater Cincinnati, across the country

    and around the globe.

    Michael FisherPresident & CEO

    Thomas CodyChairmanBoard of Trustees

  • In Our Community

  • FIGHTING ASTHMA

    New approaches inside andoutside the hospital helpchildren keep severe asthmain check.

  • Cincinnati is a city with many great features beautifulneighborhoods, a reasonable cost of living, stable employment,a world-class symphony, zoo, and more.

    Its geography, however, places it at the environmentally

    tricky confluence of low-lying valleys, smog-trapping

    hills and three heavily traveled interstate highways. That

    makes it an area ripe for asthma.

    The regions overall rate of pediatric asthma is more

    than twice the national average; in some urban-core

    neighborhoods, 10 times the national rate. Our doctors

    and nurses saw daily evidence of this as kids in asthma

    distress showed up in our Emergency Department.

    They took action. And what theyve done has allowed

    everyone to breathe a little easier.

    Since 2008, our asthma-related hospital admission rate

    and emergency department visits for children covered by

    Medicaid have declined more than 30 percent.

    The improvement didnt come from a breakthrough

    medication or genetic discovery.The citys pollution levels

    did not drop significantly. The shift came by applying

    the science of quality improvement. Teams of caregivers

    started making small changes, and implementing them

    consistently over time.

    Weve been working at this for several years. Most of

    our work has been about, How do we change systems

    to deliver the interventions that we already know work?

    says Mona Mansour, MD, MS, director of Primary Care

    at Cincinnati Childrens.

    ocus on tough casesThey assembled a medical team of people from every

    area in the hospital that works with kids who have

    asthma. The team focused first on children and families

    who made repeated hospital visits for the condition.

    Hospital staff also took a hard look at themselves and

    how they cared for those children.

    The goal was to get everybody on the same page when

    treating asthma, says Carolyn ercsmar, MD, director of

    the Asthma Center. The team e amined every possible

    way they could improve outcomes for kids with asthma; the

    list of improvements they have made is long, and growing.

    t leftUsing proven treatments

    consistently has been the key to

    successfully managing asthma,

    says Dr. Mona Mansour.

  • Taking it to the streetsOutside the hospital, our researchers have been studying

    the impact of traffic and air pollution, and pollutants in the

    home environment, on asthma.

    One environmental factor thats worsening asthma rates

    is diesel exhaust. Diesel emissions produce tiny particles

    of harmful chemicals that can settle deep into the lungs.

    They are small, nasty particles, says Patrick Ryan, PhD, an

    environmental epidemiologist in the Division of Biostatistics

    and Epidemiology. They are worse than other pollutants

    because near the source, such as trucks and buses, most

    (of the particles) are ultra-fine.

    Ryan was one of six researchers who conducted the Traffic-

    Related Air Pollution (TRAP) study, published last March in

    The Journal of Pediatrics. Led by Nicholas Newman, DO,

    MS, and Robert Kahn, MD, in our Division of General and

    Community Pediatrics, the study included 758 Cincinnati

    children ages 1 to 16. It examined the effects on asthma

    rates and hospital readmissions on children exposed to

    factors such as tobacco smoke and traffic pollution; the

    study also factored in a childs socioeconomic situation.

    The results showed that although the effects differed

    among black and white children, the factors contributed

    significantly to asthma in each group.

    The TRAP study is just one of many explorations into the

    environmental and socioeconomic factors that contribute

    to asthma. Our doctors also have linked high rates of

    emergency room visits for asthma to kids who live in

    substandard housing conditions, where exposures to mold,

    dust mites and cockroach dander aggravate their health.

    Their work is further evidence that improving childrens

    health must include improving the communities in which

    they live, says Newman. Sometimes, the answer isnt just

    a prescription, but a system. I cannot write a prescription

    for a new home or clean air.

    STEPS TAKEN BY THE ASTHMA IMPROVEMENT TEAM

    A new Asthma Risk Assessment Tool gets a complete picture of a childs life and

    the factors that might contribute to his asthma.

    After a hospital or ED visit for asthma, children are sent home with a 30-day

    supply of asthma medications.

    Children are tested to determine if cigarette smoke (a leading aggravating factor)

    is present in the childs home environment; parents are offered ways

    to reduce or stop smoking.

    ***

    The Asthma Complex Care Center, an in-hospital day treatment program, helps

    tough-to-manage cases by compressing months of asthma-related services into

    a single day.

    Telehealth technology monitors patient progress between visits.

    *

    *

    Small steps, big impact:Drs. Carolyn Kercsmar (top) and Maria

    Britto are using improvement science

    to change the way we care for kids

    with asthma.

    PAGE 8 CINCINNATI CHILDRENS

    Sometimes, the answer isntjust a prescription, but asystem. I cannot write aprescription for a new homeor clean air.

    ChildrensHospital_AnnualReport_Insides_FA2.indd 11 12/9/14 12:21 PM

  • OUR COMMUNITY-FOCUSED ASTHMA IMPROVEMENT EFFORTSWe work with school systems and community groups to improve screening and monitoring of children at high risk

    for asthma recurrence.

    We have identified hot spot neighborhoods with the highest risk factors for asthma poverty, poor housing and

    environmental contaminants.

    We have joined with the Cincinnati Health Department on the Collaboration to Lessen Environmental Asthma Risks

    (CLEAR) to support environmental health interventions, including health code enforcement in the community.

    We collaborate with the Cincinnati Legal Aid Society in the Cincinnati Child Health-Law Partnership, which helps

    families improve substandard housing and negotiate other legal concerns that affect child health.

    We are instituting a program to help children stick with their asthma medications even when staying away from home

    with relatives or other caregivers.

    *

    *

    *

    *

    *

    his is based on Leya s

    drawing of someone who

    is happy and healthy.

    PAGE 9CINCINNATI CHILDRENS

  • PUTTING KIDS BACKTOGETHER AGAINCincinnati Childrens joins withcommunity agencies to pieceback lives shattered by abuse.

  • It is early on a summer morning, but the outdoor space is hummingin full play mode. Kids zip by on bikes and scooters. Others turnplastic water bottles into squirt guns. Boys scramble to the top ofa jungle gym. Girls, braids and ponytails flying, compete to swingthe highest. There are lots of happy squeals.

    It could be any summer day camp. But the kids are not

    just any kids.

    Every child on this playground is a victim of abuse or

    neglect. Some have been locked in cages or closets.

    Others have been beaten, starved or sexually assaulted.

    Many come from homes where parents are mentally ill,

    drug-addicted, or victims of domestic violence. Many

    live in foster care.

    Despite their exuberance at play, these children face

    enormousemotional, intellectual andphysical challenges.

    They might have difficulty talking, problems with motor

    skills or toileting. They find it hard to trust people. A

    number suffer from the same post-traumatic stress that

    plagues veterans of combat. They can be aggressive and

    abusive, or completely withdrawn.

    Describing these 3-, 4- and 5-year-olds as lucky might

    seem preposterous, but it is true. They were fortunate

    enough to be referred by county childrens services to

    the TIP (Therapeutic Interagency Preschool) program at

    Cincinnati Childrens.

    It is a step that might very well save their lives.

    The TIP program, now in its 25th year, provides

    educational, developmental, mental health and safety

    monitoring services to children from age 3 to 5 who have

    suffered severe abuse and neglect. This year, the program

    will expand to begin with infancy (see page 5).

    TIPs goal is to prepare children to succeed in school,

    and in life.

  • They might come in as cases of neglect, butthen we get the rest of the story.What happens to a child when his most significant relationship is disrupted by

    violence? asks Jane Sites, EdD, LSW, the programs executive director. Its the question

    she asked when she started with the program as a doctoral student, nearly at its

    inception. Little was known then about the psychological effects of abuse on children.

    Back then, we thought, Their bodies are fine, they can see, they can hear. They

    might be angry, she says. We didnt think about developmental issues or know

    what reactive detachment disorder, or PTSD, or bipolar looks like when it starts to

    express itself at age 4 or 5.

    Treating the whole chilBut they learned, and that learning became the foundation of a program that cares

    for the whole child at a most vulnerable and formative stage of life.

    urrently, TIP cares for children at a time, with a near constant waiting list.

    inety five percent of the children are referred by amilton ounty Job and amily

    Services as open cases of abuse or neglect. They are never clear cut, says Sites,

    and never easy.

    They might come in as cases of neglect, but then we get the rest of the story, she says.

    For 25 years, the TIP program has

    helped even the most severely

    abused children flourish, says

    executive director Jane Sites.

    TToys li e this ooden courtroom

    set help therapists prepare ids

    or di cult and potentially

    scary experiences.

    TTlinical counselor Thomas ol er

    observes a child in a therapy session.

  • their work look like play, using every opportunity to

    help children understand and navigate a difficult life.

    Everyone is vigilant. Even the programs bus drivers are

    taught to look for signs that a childs safety or well-being

    is endangered. Coordinators talk with the childs parents

    or guardians weekly and visit the childs home regularly;

    parents are encouraged to participate in therapy with

    their children.

    Setting the stage for successMost children stay in the TIP program for a full year,

    although they can continue if they need more time. The

    success rate, even for the most severely traumatized

    children, is remarkable.

    Our data show that children who participate in TIP for

    one year even those who begin the program as the

    most at-risk make the most developmental progress of

    any preschoolers in Hamilton County Head Start, Sites

    says. They hold their own with age level peers when

    they start school.

    Clinical counselor Francoise Pierredon describes her work with the childrenas therapy that takes the form of play. It helps the children express feelingsthey dont have words for.

    Knowing a childs storyClose relationships with area caseworkers ensure that

    TIP staff know as much as possible about each child,

    says program coordinator Ginny Crotte. So when a

    child refers to something awful or sad in his life, we are

    not surprised. We are prepared to respond to what hes

    dealing with.

    The stories are often complicated by an overburdened

    caseload and court system. Decisions on adoptions can

    take up to four years or more, while children remain

    with unstable parents or bounce from one foster home to

    another. One of Crottes roles is to testify in court on behalf

    of the children. The system itself can be traumatizing,

    she says. We try to advocate for whats best for the kids.

    Helping children through this is a remarkable staff of

    social workers, psychiatrists, speech therapists, occupational

    therapists and physical therapists from Cincinnati Childrens,

    and teachers from Hamilton County Head Start. There

    is close collaboration with caseworkers from Hamilton

    County Childrens Services.

    Work that looks like playMuch of the therapy provided by the staff is invisible to

    the untrained eye. Clinical and mental health services are

    deftly woven into TIPs daily activities. Therapists make

    PAGE 13CINCINNATI CHILDRENS

    ChildrensHospital_AnnualReport_Insides_FA2.indd 16 12/9/14 12:20 PM

  • A TIP GRADUATE MAKES A HAPPY LANDING

    PAGE 14 CINCINNATI CHILDRENS

    Little Logan Beal had no idea as he bounced from one

    foster home to another that he was headed for a safe

    landing. Since being removed from his biological mother at

    the age of 3, Logan was heading into his fourth placement

    in 16 months. Then he landed with Sarah and Ben Beal.

    The Beals were well suited to take on a foster child.

    Sarah was completing her fellowship training at Cincinnati

    Childrens and had a PhD in developmental psychology;

    Ben, who works in construction, was the one who suggested

    they become certified foster parents.

    But Logan would challenge even the best-equipped family.

    He came with a long list of behavior problems resulting

    from neglect and abuse some of it allegedly linked to the

    foster care system itself. Hed been kicked out of several

    day care and preschool programs for angry and aggressive

    outbursts. A caseworker referred him to the TIP program

    as a last resort.

    When the Beals first met Logan, they knew little about

    his background.

    His previous foster mom had him on the porch with an

    overnight bag. We walked up, she introduced us, he took

    my hand and we walked to the car. That was it, Sarah says.

    The plan was to have an overnight, get-acquainted visit.

    Sarah was to return Logan to the TIP program the next day.

    That was when she first learned about TIP, which turned out

    to be a lifeline.

    The counselors and staff at TIP knew Logans history, she

    recalls. They provided us with insights we never could have

    had about how to help him.

    Over the following months, the TIP staff helped the Beals

    piece together the puzzle of Logans life everything from

    what caused his furious temper tantrums to what he liked

    to eat.

    Without TIP, it would have been really difficult to make sure

    he was comfortable in his new environment and to develop

    our relationship, Sarah says.

    Sarah and Ben adopted Logan last year.

  • Thanks to the generosity of the Carl H. and Edyth B. Lindner

    Foundation, the TIP program has expanded its services to

    children from birth to age 3. These new services, which began

    in September 2014, combine home visits with sessions at the

    TIP preschool and will serve 12 additional children each year.

    This program really touched our hearts, says Carl H.

    Lindner, III. To support Cincinnati Childrens efforts to reach

    more children who are abused and who will benet from the

    preschool program was something we were eager to get

    behind. Investing in these types of early intervention initiatives

    will change the trajectory of these kids lives. What better

    investment could one make than in improving the life of a child?

    LINDNER FAMILY GENEROSITY ALLOWSPROGRAM EXPANSION

    PAGE 15CINCINNATI CHILDRENS

    W

    ARL LINDNER III

    AThis is based on Ananyas

    drawing of kids her age

    having fun.

  • Across the Countryand Around the Globe

  • Program takes expertise in sicklecell treatment to Uganda, where itis sorely needed

  • It is all part of The Ugandan Sickle Surveillance Study

    (US3), a cooperative endeavor between Cincinnati

    Childrens and the Ugandan Ministry of Health. It started

    in February 2014 as a way to identify sickle cell in one

    of the areas of the world most affected by the disease,

    and least equipped to handle it.

    Sub Saharan frica is ground ero for

    sickle cell, says ussell are, M ,

    h . Its where the disease

    originated, where the gene

    mutation rst occurred, and

    where most of the patients are.

    are, director of the ivision of Hematology at

    Cincinnati Childrens, has been researching sickle

    cell disease for 30 years. ut his efforts had focused

    on children in the United States a tremendously

    worthwhile effort, but not nearly enough. Its not

    addressing the global burden of the disease,

    he says. nly 1 percent of the sickle cell

    patients in the world are born in

    orth merica.

    It took several trips to frica for him

    to reali e how little was being done

    in a place where the incidence of

    the disease was so great.

    Program manager Arielle

    Hernandez and lab manager

    Thad Howard examine test

    results from Ugandan patients.

    PAGE 19CINCINNATI CHILDRENS

  • Charles Kiyaga (left), with Dr. Russell Ware, oversees the US3 study

    in Uganda. The program was designed to be run by the Ugandans;

    they process some 2,000 tests each week.

    Dr. atrick c ann

    PAGE 20 CINCINNATI CHILDRENS

    The Reali ing ffectiveness cross Continents with ydro yurea (R C ) Study hopes to

    bring a proven, low cost treatment to a continent in desperate need of better outcomes for

    children with sickle cell disease.

    dentifying children with sickle cell and providing them with routine vaccinations and penicillin

    helps prevent much of the mortality of sickle cell disease. ut it does not change the course

    of the disease or prevent its painful, crippling complications. Currently the only medicine that

    spares children those side effects is hydro yurea.

    Russell Ware, D, has researched the bene ts of hydro yurea for several decades. The drug

    boosts production of fetal hemoglobin, which protects blood cells from sickling. Typically,

    babies stop producing fetal hemoglobin during the rst year of life.

    Ware and atrick c ann, D, are leading the R C study to evaluate the safety and ef cacy

    of hydro yurea in three frican nations the Congo, Kenya and ngola. The four year study

    will enroll 00 children.

    The drug has proven safe even for very young children in fact, the will revise treatment

    guidelines this year to include hydro yurea as standard treatment for children with sickle

    cell disease.

    ur goal is to prove that hydro yurea is possible and safe in frica, says c ann, so we

    can help the World ealth rgani ation and the ministries of health develop a strategy for its use.

    Ware did some digging, and learned about the Early Infant

    Diagnosis (EID) program, begun in Uganda in 2006 by

    the United Nations to combat high rates of HIV infection

    in babies. The program established a national network

    that collects and tests 100,000 blood samples each year

    from infants born to HIV-infected mothers. Blood spots

    from standard heel sticks are collected on postcards, then

    transported from around the country for testing at the Central

    Public Health Laboratories in the nations capital, Kampala.

    After analysis for HIV, the samples were thrown away. Ware

    wondered: why not re-purpose them? By simply using those

    same cards to test for sickle cell we could get an idea of the burden

    and distribution of disease across the country.

    He and his team worked with Ugandan Ministry of Health officials

    and staff of Makarere University in Kampala to make it happen.

    The result is the US3 study.

    Of the estimated 400,000 babies born in the world each year with

    sickle cell disease, 300,000 of those births occur in sub-Saharan

    Africa. There are African countries with higher rates of the disease,

    but Ware chose Uganda because it was politically stable, safe,

    and Ugandan officials had a growing awareness of sickle cells

    devastating effects.

  • Creating a sustainable modelWorking with staff of the Ugandan Health Ministry, in

    under two weeks, Wares team converted a small storage

    area in the central lab in Kampala into a fully operational

    sickle cell testing laboratory. Cincinnati Childrens donated

    the equipment and testing supplies; Wares team helped

    set things up and conducted the training.

    We started from scratch, says Arielle Hernandez, the

    US3 project coordinator. They didnt have a sickle cell

    lab - no capacity, no equipment or training whatsoever.

    It was just a storage closet.

    Hernandez and Thad Howard, Wares research lab

    manager, worked with the Ministry of Health staff to

    write a study protocol. They trained four Ugandans to

    perform the tests and run the lab.

    Those technicians now process about 2,000 blood

    samples each week; the goal is 75,000 to 100,000

    within a year. Weekly Skype meetings allow staff on

    both sides of the world to talk through questions and

    concerns. Test results are reviewed each week by a team

    in Uganda as well as by Howard, who says the skill and

    hard work demonstrated by the Ugandan technicians

    has been remarkable. Nobody else is doing this in the

    world, he says. They are quickly becoming the leader

    in screening.

    Ware says the engagement of the Ugandans is crucial to

    the studys goal of turning the tide of sickle cell disease.

    When you think about studies overseas, the idea of

    teaching and sustainability is important. They have

    learned to do this quickly and well.

    lanning a eadAfter just ve months, the US3 study has pinpointed

    four areas in Uganda where the incidence of sickle cell

    is highest. Ware and his team are working on ne t steps

    for when the surveillance study wraps up ne t ebruary.

    We have already planned with the Health Ministry to

    begin a new project to screen all infants born in those

    four districts, he says.

    t doesn t ta e e ensi emedi ines to ma e si leell better

  • Treatment is crucial and affordableOnce children are identified as having sickle cell, getting proper treatment to them is the essential

    next step, says Patrick McGann, MD, a Cincinnati Childrens hematologist who is working with Ware

    on another study in Africa of treatment for sickle cell. (See page 20).

    The two hope to use US3 data to convince government officials and funding organizations of the

    scope of the sickle cell problem, and the difference treatment can make.

    It doesnt take expensive medicines to make sickle cell better, says McGann. What these babies

    need are routine vaccinations and prophylactic penicillin. Those two steps will prevent a huge

    number of deaths. Without that, it is estimated that 50 to 80 percent of the babies will die in the

    first couple years of life.

    The Cincinnati Childrens sickle cell

    team trained Ugandan Health Ministry

    staff to run the sickle cell lab in Kampala.

    PAGE 22 CINCINNATI CHILDRENS

    ChildrensHospital_AnnualReport_Insides_FA2.indd 25 12/10/14 8:59 AM

  • CINCINNATI CHILDRENS PAGE 23

    Cincinnati Childrens conducts a variety of medical

    studies with children around the world. Countries where

    we have a presence include Australia, Bangladesh, Brazil,

    China, France, Greece, Honduras, India, Israel, Mexico,

    Nepal, the Netherlands, Norway, Spain, South Africa, the

    United Arab Emirates and the United Kingdom.

    1.6 millionbabies born each year

    No newborn screening No national treatment program

    UGANDA

    20,000babies born eachyear with sic le cell

    50 to 80 percentdie before age

    4.1 millionbabies born each year

    Universal newborn screening All affected babies referred to sic le cell treatment programs

    UNITED STATES

    3,000babies born eachyear with sic le cell

    95 to 99 percentsurvive to adulthood

    U EDI A EAS ANS T E G E

    STATISTI S E EA A STA NT AST IN T EI A T SI E E DISEASE

  • TRANSFORMING LIVES HERE AT HOME

    Treatment with hydroxyurea allows Shanoah Moore, 12,

    to pursue cheerleading and gymnastics.

    PAGE 24 CINCINNATI CHILDRENS

    NATIONAL STUDY PROVES HYDROXYUREAS BENEFIT

    Raymond Bullucks was diagnosed with sickle cell disease

    as a toddler. His early childhood was an odyssey of medical

    encounters, including frequent blood transfusions, surgery

    to remove his gall bladder and pain crises severe enough

    to require two or three hospital admissions per year.

    Then at age 15, his doctors prescribed hydroxyurea, a

    daily medication that increases the bodys production of

    fetal hemoglobin. The treatment reduces sickling of red

    blood cells, which in turn reduces pain.

    When I was in grade school, I could get headaches from

    exercising too much in gym class or just being outside

    too long in the heat, he says. But in high school, I was

    able to get all the way through marching band camp in the

    middle of August without any crises.

    Although hydroxyurea treatments are far from a cure, the

    medication has kept his pain in control for years, says

    Bullucks, now 29 and an attorney in Cincinnati. He has

    needed hospital care only twice in the past several years.

    Hydroxyurea is not a new drug, but research demonstrating

    its value and minimal risks for younger children is relatively

    recent. The latest recommendations support administering

    the drug to children as young as 9 months if they have

    three or more pain crises per year from sickle cell disease.

    Sonya Moore has seen how hydroxyurea improved life for

    her 12-year-old daughter, Shanoah, who was diagnosed

    with sickle cell disease shortly after birth. She was in the

    hospital about three or four times a year and on antibiotics

    and pain medications around the clock for two or three

    days at a time, Sonya says.

    At age 5, after another hospital stay to control a pain

    crisis, Shanoah started taking hydroxyurea. It has been a

    godsend for her, Sonya says. Day to day, you would not

    know she has sickle cell. Shes bubbly, bright and active.

    Shes a cheerleader. Shes taking gymnastics.

    Since taking hydroxyurea, Shanoah has had far fewer

    hospitalizations. She has needed only five blood

    transfusions in her lifetime; many children her age with

    sickle cell require monthly blood transfusions. The key,

    Sonya says, is taking the medicine consistently. Once

    your child starts feeling better, she may not want to take

    it, she says. But she needs to keep on taking it so she

    can remain feeling better.

    Raymond Bullucks, 29, credits hydroxyurea for a relatively

    pain-free life with sickle cell disease.

    Hydroxyurea has been so successful in alleviating the

    painful and often life-threatening symptoms of sickle cell

    anemia that recently the NIH ended a national study one

    year early.

    The study, led by Cincinnati Childrens investigators,

    examined the use of hydroxyurea in children with sickle

    cell who were at risk for stroke. Children in the study

    who received hydroxyurea did as well as those on chronic

    transfusions, with no harmful side effects. Russell Ware,

    MD, and Patrick McGann, MD, hope that this success

    will encourage more doctors to prescribe the drugs use

    in pediatric patients.

  • Shanoah, age 12This is based on

    Shanoahs drawing of a

    world without sickle cell.

    CINCINNATI CHILDRENS PAGE 25

  • Kaylee, age 10This is based on Kaylees

    drawing of what future

    scientists might look like.

    PAGE 26 CINCINNATI CHILDRENS

  • AKIN FOUNDATION FUELS DISCOVERY

    The breakthroughs featured in this report are resulting in

    safer, more effective treatments today and making many

    illnesses a thing of the past.

    Supporting the research efforts of our scientists is one of

    the best ways families can say thank you for the care

    provided to their children at Cincinnati Childrens.

    No one understands this better than Justin and Kristin

    Akin. The Akins lost their sons, Matthew and Andrew, to

    hemophagocytic lymphohistiocytosis (HLH)arare immune

    system disorder that is fatal if not found and treated quickly.

    The Akins learned too late about the breakthrough care

    for HLH at Cincinnati Childrens. But in their drive to spare

    other parents the pain of their experience, the Akins

    established a foundation to raise money for the HLH

    Center of Excellence at Cincinnati Childrens the most

    experienced HLH research and care facility in the world.

    PAGE 27CINCINNATI CHILDRENS

    f we had started out at Cincinnati Childrens, our outcome

    probably would have been different, Justin says. Thats

    why people are coming here from around the world.

    n addition to the Akins personal investment, Justin has

    spearheaded a mile bike ride, over seven days, to raise

    funds for the HLH Center. This year, Justin and his fellow

    riders delivered a , check to Cincinnati Childrens.

    Staying active with Cincinnati Childrens inspires me,

    Justin shares. There is no better place in the world they

    have the best team of experts who are passionate about

    curing this disease. The cure will be found here, and ll

    always help them any way can.

  • GLOBAL EXPOSUREOur Global Health ResidencyTrack trains doctors to carefor children where resourcesare scarce, both overseasand at home

    ChildrensHospital_AnnualReport_Insides_FA2.indd 31 12/9/14 12:20 PM

  • At left:Dr. Erin Hoehn, now a fellow

    in emergency medicine, with

    Global Health Residency Track

    director Dr. Chuck Schubert.

    e e e e e t e e ef t t t t t e e e t e t l t l l el l l e e e te te e e l f l te e l t t e t et e el t e

    In the muggy heat of the rainy season, oxygen tubing

    was cleaned and left out to dry for reuse. And in the

    pediatric zone where Hoehn would spend most of her

    time, more than 400 sick children some of them

    dying had been squeezed into 300 beds.

    There were patients and families lining the hallways,

    moms sitting on the floor trying to feed their kids,

    Hoehn remembers. There were only four pediatric-

    trained physicians on staff (it was 2013) for the sad

    abundance of children with malaria, malnutrition,

    sepsis, and HIV.

    It was a terrifying first day. Hoehn wanted to be helpful,

    but was worried she wouldnt be able to handle it. She

    tried to save the lives of children in a hospital that had

    extremely limited resources. Children died, too sick

    to be saved. Each night, Hoehn and another resident

    debriefed with Chuck Schubert, MD, who directs the

    Global Health Residency Track for Cincinnati Childrens.

    They often did this over dinner with Schubert and his

    wife, Julie, in the house they all shared in Lilongwe.

    Its an intense situation, says Schubert. In Malawi,

    when a child dies its as much a failure of the whole

    public health system there as it is the amount of care

    we can provide them.

    This experience of practicing cross-cultural medicine

    to care for underserved populations is one had by

    about 20 Cincinnati Childrens residents each year, in

    six established sites with strong connections to our

    faculty and options to rotate through seven other

    vetted sites.

    Residents might rotate in locations like the Hospital

    Infantil Robert Reid Cabral in the Dominican Republic,

    where Cincinnati Childrens graduate Rafael Mena, MD,

    directs the newborn and hospitalist service. Or they

    might travel to Albert Sabin Hospital in Fortaleza,

    Brazil, where Cincinnati Childrens gastroenterologist

    Sean Moore, MD, spends half the year doing research.

    PAGE 29CINCINNATI CHILDRENS

  • Attracting top studentsThe opportunity to practice medicine in foreign wards

    is what attracts top candidates like Hoehn to Cincinnati

    Childrens already competitive residency program.

    Two of our new residents right now have said one of the

    big reasons they wanted to come here was our great global

    health program, says Schubert.

    Two rotations in Malawi taught Hoehn to recognize sick.

    Its where Hoehn, now an emergency medicine fellow at

    Cincinnati Childrens, chose her specialty. I enjoyed taking

    care of the sicker kids, she says. She also recognized that

    additional training in emergency medicine would better

    prepare her for future global health work.

    Building self-relianceIt also made her a better doctor at home. Just as she did

    in Malawi, Hoehn sees children with pneumonia, viral

    syndromes, and influenza. She sees kids severely ill with

    sepsis. A lot of those same disease processes are seen

    here, except here you have more resources to deal with

    them, and youre likely catching them earlier, she says.

    Dr. Chuck Schubert hopes Global Health Residencytraining will encourage doctors to devote their careersto serving underserved populations.

    Schubert, who himself got the global health bug after

    a years work at a rural mission hospital in Zambia,

    emphasizes to residents that their experience overseas and

    here in Cincinnati builds skills that transfer to either setting.

    The great majority of them will end up working in the

    United States, says Schubert, but my not-so-private

    goal or hope is that theyll continue to be involved with

    underserved populations. Schubert cites a study by

    the Robert Graham Center reporting that residents who

    participated in international health tracks were more likely

    to practice abroad, care for the underserved in the U.S., and

    have a higher percentage of uninsured and non-English-

    speaking patients in their practices.

    The program begins with a global health boot camp for

    residents that offers a twoweek advocacy course and

    another two weeks providing care at the Gallup Indian

    Medical Center in New Mexico, which serves members

    of the Navajo Reservation and the Zuni Nation. When in

    Cincinnati, residents attend monthly educational meetings,

    PAGE 30 CINCINNATI CHILDRENS

    Support throughout the program

    ChildrensHospital_AnnualReport_Insides_FA2.indd 33 12/9/14 12:29 PM

  • When residents return from their overseas experiences,

    Global Health faculty at Cincinnati Childrens mentor

    them through their re-entry. Schubert says its not

    uncommon to hear residents compare the number of

    pediatricians on a single service at Cincinnati Childrens

    versus the few in an entire hospital overseas.

    It can be difficult to come back, says Hoehn, where

    we have a wealth of doctors and medical professionals

    and nurses and nutritionists every resource under

    the sun knowing the needs she left behind.

    A course set for lifehey are hard lessons, but ones that also inspire. Global

    health graduate isa youb- odrigue , , returned

    to her home city of l aso, exas, and is developing

    an immigrant education rotation for residents there.

    nder the guidance of ark Steinhoff, , director

    of the Global Health Center and the Global Health

    lus fellowship, another graduate, my ule, , is

    completing a hybrid fellowship in hospital medicine

    and global health and will work at enwek Hospital in

    Western enya for almost a year. She hopes to focus on

    neonatal care.

    Hoehns future will balance domestic emergency

    medicine and trips to far- ung locales that could use

    the expertise of a highly trained and compassionate

    pediatrician. s for the hospital she served in alawi,

    this September it will have pediatricians, she reports

    an increase that still far from meets the need.

    PAGE 31CINCINNATI CHILDRENS

    A AFor Ronine Zamor, MD, choosing to travel to Haiti for her Global Health

    Residency experience had special significance. Zamors family is from Haiti.

    They moved to the U.S. in 1980.

    She had spent time there during her undergraduate and medical school years,

    and wanted to return as a resident to work in a clinical setting in Haiti, and

    to learn more about my own culture.

    It was an important factor in her choice of Cincinnati Childrens for her

    residency.

    I wanted a program that would support my interest in going back to Haiti,

    and to potentially help me develop something sustainable.

    A third-year resident, Zamor spent a month last year in Haiti and will return

    again this January. Although she hasnt yet decided where her career will take

    her, she imagines it will involve a continued relationship with her home country.

    I might go back for a year or two to immerse myself in the culture, which is

    so important to practicing medicine, she says. Or I would like to have an

    ongoing partnership with a hospital or clinic there.

    and a ournal club encourages shared interests in cross-

    cultural matters. esidents must also complete scholarly

    work to graduate with a global health certificate.

  • Accelerating Innovation

  • FINDING PATTERNSIN THE NOISEHow the emerging field ofgenomics is acceleratingour discovery

  • Forget plastics. If Hollywood were to re-make the famous 1967film, The Graduate, todays entrepreneur might have a new wordof advice for the inexperienced title character: genomics.

    While genetics describes the study of genes and their

    role in inherited conditions, genomics describes an

    exploding field of discovery. It flows from new technology

    that allows scientists to rapidly sequence and analyze

    the entire human genome, as well as the genomes of

    thousands of other organisms, from bacteria to mice.

    The life-transforming potential of this new science is

    immense. The promise of genomics includes a new era

    of precise, personalized medicine and a wave of vastly

    improved treatments for many complex disorders.

    But the path to those goals could be fraught with

    potential wrong turns. The challenges involved in

    translating genomic discoveries into everyday medical

    care are immense. Yet world-class research institutions

    like Cincinnati Childrens are tackling those challenges

    head-on. In fact, accelerating discovery through genomics

    is one of the key components of the medical centers

    Next Era strategic plan.

    The biggest revolution in medicine in the past 15 to

    20 years has been that we have the ability to measure

    and analyze genetic material and apply it to patient

    care at faster speeds and lower costs than ever before,

    says Tracy Glauser, MD, associate director, Cincinnati

    Childrens Research Foundation. If we want to continue

    to be the leader in childrens health, we need to

    incorporate genomics into our entire medical approach.

    When Glauser and colleagues describe the roles genomics

    can play in biomedical research, they begin with the

    patient the prime source of data gleaned from the

    tiniest biological samples and the latest electronic medical

    records. The conversation quickly progresses to the

    world of biomedical informatics, where the technology

    to gather and analyze big data has exploded. It then

    moves into the realm of discovery, where scientists use

    this wealth of data to gain new understandings of human

    development and disease processes. This in turn leads to

    new diagnostic tools and improved treatments that will

    have a far-reaching impact on care.

    PAGE 35CINCINNATI CHILDRENS

    t left:A genetic test developed at

    Cincinnati Childrens found a

    mutation in Gianna (left) and Pia

    Schueler that explained and

    helped doctors improve their

    hearing loss.

  • Discovery starts with the patientRaphael Kopan, PhD, director of Developmental Biology,

    breaks the modern history of medical research into two

    eras. The era of molecular biology began in 1953 with

    James Watson and Francis Crick describing the double-

    helix structure of DNA. Then in 2003, scientists published

    the first full sequence of the human genome, a 13-year,

    $3 billion project that opened the door to a new era of

    genomics, proteomics, metabolomics and other omics.

    The ability to conduct studies at the genomic level has

    transformed the research enterprise.

    In the not-so-distant past, we made genetic discoveries

    by taking an animal amenable to genetic manipulation,

    screening that animal for mutations that we could detect,

    and analyzing what those mutations did. Then we would

    search the human genome to try to find an equivalent

    mutation. Only then could we determine if there was

    something we could do to offer some relief, Kopan says.

    We have cured many mice in this process, but not so

    many humans.

    Now,however, high-throughput gene sequencing technology

    can capture any persons entire genome for as little as

    $1,000 and analyze that individuals entire set of 3 billion

    nucleotides in a matter of days.

    For the first time in my history as a researcher, we do not

    need to begin the discovery process with animal models.

    We can start with the patient and run experiments that

    look directly at the patients own genomic information,

    Kopan says.

    Big data keeps getting biggerSince the first human, mouse and yeast genomes were

    documented, the research world has published whole-

    genome data for more than 1,000 organisms. Research

    centers have amassed immense repositories of genetic

    profiles of people with all manner of diseases, infections

    and inherited conditions. Huge libraries store details on

    how thousands of medications and promising chemical

    compounds affect human and animal genomes.

    Members of the Division of Biomedical Informatics help

    colleagues draw insights from massive amounts of data

    generated by genome-wide analysis. From left: Drs. Nathan

    Salomonis; Jun Ma; Peter White, division director;

    and Anil Jegga.

    PAGE 36 CINCINNATI CHILDRENS

    ChildrensHospital_AnnualReport_Insides_FA2.indd 39 12/9/14 12:35 PM

  • The chase is on to find crucial gene-drug-disease

    associations that could lead to improved, targeted

    medications. Experts in the fast-growing field of

    biomedical informatics are developing the powerful

    hardware and software needed to process, store and

    retrieve so much data. Even the scientists themselves

    wonder how any human mind can comprehend it all.

    If youre considering the entire genome, its not possible

    to analyze all this through a reductionist approach, says

    Peter White, PhD, director of Biomedical Informatics.

    Now we are asked to look at discovery from an entire-

    disease perspective, over lots of potential patients, and to

    consider the entire genome at once.Our goal is to develop

    unified processes for generating and analyzing genomic

    information that is seamless across the enterprise.

    A new world of discoveryJohn Harley, MD, PhD, director of the Center for

    Autoimmune Genomics and Etiology (CAGE), compares

    the potential of genomics to Columbus discovering the

    New World.

    The exploration is just beginning, Harley says.

    Theres no medical problem outside the reach of these

    new approaches. Genomic research has implications

    for asthma, sickle cell disease, diabetes, depression,

    seizures, and more. There will be new drugs that drop

    out of this effort that will give physicians the capacity

    to encourage or discourage inflammatory response,

    or control how fat is metabolized, or even control the

    process of atherosclerosis.

    The challenge: finding those valuable needles in a

    haystack 39,000 miles high.

    Were working in terabytes when most people cannot

    understand what a gigabyte is.And soon well be working

    in petabytes, Harley says.

    Were working in terabytes when most people cannot understandwhat a gigabyte is. And soon well be working in petabytes.

    HOW BIG IS A PETABYTE?One petabyte is equivalent to 1,000 terabytes or 1 million gigabytes. Thats really big.

    A single petabyte could hold 500 billion pages of standard printed text.

    A 1 million-page stack of paper would stand about 416 feet high. That means apetabyte-sized stack of paper would stand more than 208,000,000 feet high.

    Thats about 39,000 miles. The Earths circumference is 24,860 miles around.

    ***

    *Dr. John Harley

    PAGE 37CINCINNATI CHILDRENS

    ChildrensHospital_AnnualReport_Insides_FA2.indd 40 12/9/14 12:35 PM

  • Greinwalds team sees 200 to 250 children every year who

    travel here from around the country. Cincinnati Childrens

    is one of the few centers nationwide that performs and

    interprets genetic tests.

    Thanks to nationally mandated hearing screening at birth,

    most parents in this country are informed early if their child

    has hearing loss. But the OtoSeq test provides details that

    the mandated screen cannot.

    The test allows interventions that can be transformative,

    Greinwald says. At 1 month of age, we can tell families

    what caused the hearing loss, its likelihood of progression,

    and if it is associated with other medical problems. We can

    give them valuable information from the start, so they can

    get on with treatment.

    And treatment is crucial in helping a child develop speech

    and language skills.

    Some children will do just fine with hearing aids,Greinwald

    says.But genetic testing can predict a more severe phenotype

    in which hearing aids are not the long-term solution and

    parents should think about cochlear implants.

    Dr. Raphael Kopan Dr. John Greinwald

    PAGE 38 CINCINNATI CHILDRENS

    It requires collaborations of large groups of people with

    enormous amounts of expertise to extract the secrets hidden

    in all that data, Harley says. This isnt something that can

    be done by a lone entrepreneur working in a garage.

    Building on the opportunities presented by genomics will

    require research and educational institutions like Cincinnati

    Childrens to train a generation of young investigators in a

    new form of scientific literacy.

    Our species gift and curse is our ability to see patterns in

    noise, Kopan says. Everyone who has ever seen a shape

    in a cloud can relate to this. Clouds are nothing more than

    random patterns of water vapor. But our brains see animals,

    faces and all sorts of other shapes within them. This is why

    it is so important to learn how to use big data appropriately.

    Otherwise, we can waste a lot of time and effort chasing

    patterns that are just water vapor.

    Genomics already showing impact on careDespite the challenges, our doctors have already shown

    how genomic research is improving care for children.

    The OtoSeq hearing loss test was developed based on

    research led by John Greinwald, Jr., MD, an otolaryngologist

    at Cincinnati Childrens. The test uses rapid next-

    gen sequencing to detect genetic mutations that cause

    sensorineural hearing loss a permanent, genetically

    linked hearing loss that affects 1 in 700 children.

    ChildrensHospital_AnnualReport_Insides_FA2.indd 41 12/9/14 12:19 PM

  • CENTER FOR PEDIATRIC GENOMICS

    Cincinnati Childrens plans to launch a Center for Pediatric

    Genomics in February 2015. The center will serve as an

    incubator for genomics projects within the medical center

    that show strong scientific merit and likelihood of success.

    White and Harley lead a 15-member steering committee

    that will help develop the center. They plan to select several

    pilot projects in the centers first funding cycle.

    AThousands of children who need neuro-psychiatric

    medications already have benefited from another type

    of genetic test.

    The spin-off company Assurex, based in the Cincinnati

    suburb of Mason, Ohio, has commercialized a test

    panel that was developed by researchers at Cincinnati

    Childrens in collaboration with the Mayo Clinic. Three of

    the co-inventors are still based at Cincinnati Childrens:

    Glauser, Sander Vinks, PharmD, PhD, and John Pestian,

    PhD, MBA.

    Since it was developed in 2004, more than 15,000

    patients at Cincinnati Childrens alone have received the

    neuro-psychiatric test panel. The test identifies children

    with genetic variants that make them normal, rapid or

    slow metabolizers of this class of medications. It then

    recommends how physicians can adjust medication

    doses to achieve maximum benefit.

    Now, Cincinnati Childrens is a member of the national

    Clinical Pharmacogenetics Implementation Consortium

    (CPIC),whichbrings together several leadingmedical centers

    to find gene-drug associations for many more conditions.

    Similar technologies are helping cancer patients at

    Cincinnati Childrens receive customized doses of

    chemotherapy and helping doctors prescribe carefully

    controlled doses of immunosuppressants to organ

    transplant recipients.

    This is essentially, the Next Era in action, Vinks says.

    This is a project that has made it all the way around the

    wheel, starting with a problem experienced by patients,

    discovering how genetics plays a role in that problem,

    then developing a solution that improves outcomes.

    F rs. Tracy Glauser ohn Pestian and ander inks developed a genomic drug screenthat led to a spin-off company and national collaborations.

    PAGE 39CINCINNATI CHILDRENS

  • Gianna Schueler just celebrated her hearing birthday. Its

    been five years since the busy second-graders cochlear

    implants were activated. A lively, active 7-year-old, she

    loves dolls and just took up horseback riding.

    When Gianna was born, she had trouble with head control

    and nursing, and didnt seem soothed by her mom, Annes,

    voice. Because Gianna was born at home, she didnt have

    the customary hospital hearing exam. It took until after

    her first birthdaywith physical therapy and neurologists

    appointments in betweenfor Gianna to be diagnosed

    with profound hearing loss.

    Having an answer was a huge relief to Anne and her

    husband. Honestly, at that point, I wasnt really sad, says

    Anne, because I had spent so much time trying to figure

    out what was going on with her. We felt like, shes not sick

    we can do something about this.

    So at 2 years of age, Gianna received bilateral cochlear

    implants from John Greinwald, MD.

    Then two years ago, Annes third child, Pia, was born. I

    could tell that first day that she was going to fail her hearing

    test, Anne recalls.

    By that time, Greinwald had developed the OtoSeq

    microarray test. The test uses rapid gene sequencing to

    test for mutations that cause permanent hearing loss. The

    Schuelers had both Gianna and Pia tested; both had a

    mutation associated with Usher syndrome.

    The diagnosis explained the girls deafness, their balance

    issues and the twisting Anne had seen in their necks.

    Children with Usher syndrome can also develop blindness.

    Knowing Pias diagnosis at an early age enabled the family

    to focus on developing her verbal skills. She received

    cochlear implants by 10 months of age and now attends

    Ohio Valley Voices toddler program.

    Although the OtoSeq test, and the diagnosis it made

    possible, wasnt available as early in Giannas life, the

    Schuelers feel she is well prepared to handle whatever

    the future holds. In addition to cochlear implants at

    age 2, Gianna had verbal training that prepared her for

    mainstreaming in school; she now takes horseback riding

    lessons to help with balance.

    I wish we would have known sooner with Gianna, Anne

    says, but fortunately, we happened to make the right

    decisions.

    Gene testing helped the Schueler family give their

    daughters every advantage in facing Usher syndrome.

    Their son does not have the genetic mutation.

    PAGE 40 CINCINNATI CHILDRENS

    TEST ALLOWS FAMILIES TO PREPARE

    ChildrensHospital_AnnualReport_Insides_FA2.indd 43 12/9/14 12:45 PM

  • PAGE 41CINCINNATI CHILDRENS

    Naya, age 10Nayas drawing illustrateswhat the future will be likeat Childrens.

    ChildrensHospital_AnnualReport_Insides_FA2.indd 44 12/5/14 2:13 PM

  • NEW FRONTIERS INITIATIVENeil Armstrong was a great patriot and pioneer, a humble leader who brought us to new frontiers, and a significant

    contributor to the history of scientific discovery. To honor Commander Armstrongs memory and legacy, and to spur

    the next generation of innovation, Cincinnati Childrens and the Armstrong family have created the Neil Armstrong New

    Frontiers Initiative.

    The New Frontiers Initiative is a catalyst for the next generation of discovery at Cincinnati Childrens, funding the pursuit

    of the next new scientific frontier. The fund supports breakthrough strategic initiatives most likely to quickly improve

    outcomes and quality of life for sick and injured children everywhere.

    Cincinnati Childrens has a long history of pioneering discoveries and innovation that has helped us change the outcome for

    kids here in Cincinnati, across the country and around the world. The New Frontiers Initiative helps ensure that Cincinnati

    Childrens can keep the next generation of young pioneers healthy and reaching for the stars.

    PAGE 42 CINCINNATI CHILDRENS

  • Veena, age 10This is based on Veenas

    drawing of what the

    future will look like.

    CINCINNATI CHILDRENS PAGE 43

  • As a nonprofit hospital and research

    center, Cincinnati Childrens relies on the

    support of generous friends and partners

    like you, to improve the health of children,

    in our community and beyond.

    RECOGNIZINGOUR DONORS

  • When you give to Cincinnati Childrens, you are investing in the futureof child health. You are investing in the future of children.

    We are profoundly grateful to those who have chosen to partner withCincinnati Childrens. You have a tremendous impact on our work.

    Together, we save lives and advance discovery. Together, we provide hope.Together, we Change the Outcome.

    Gifts to Cincinnati ChildrensFiscal Year 2014: July 1, 2013 June 30, 2014

    Total of

    million raised

    million a ien are an u rmillion esearcmillion reas rea es eemillion uni y u reac an re en i n

    0

    10

    20

    30

    40

    0

    0

    FY10 FY11 FY12 FY13 FY14

    O CO T T O

    2

    2

    30

    31

    32

    33

    34

    3

    FY10 FY11 FY12 FY13 FY14

    O G T T O

    YO G O TY G OW

    PAGE 45CINCINNATI CHILDRENS

  • Lifetime Giving SocietiesThe generous supporters who make up the 1883

    Society and the Sabin Society have made gifts to

    Cincinnati Children's totaling $1 million or more. Their

    partnerships are vital to our success - and play an

    important role in our recognition as a leader in pediatric

    health. Countless lives have been saved due to the

    passion of donors who support world-class research

    and safe, reliable, family-centered care.

    Gifts of every size make a difference

    Please visit www.cincinnatichildrens.org/campaign

    to view our entire Honor Roll of generous donors.

    PAGE 46 CINCINNATI CHILDRENS

    As of Fiscal Year 2014:July 1, 2013 June 30, 2014

    Sabin Society

    Dr. and Mrs. Ira A. Abrahamson, Jr.

    Ms. Jean L. Abrahamson

    American Heart Association, Inc.

    Anonymous (12)

    Neil and Carol Armstrong

    Association of Volunteers

    Estate of Ruth A. Atlas

    Autism Speaks

    Dr. & Mrs. Richard Azizkhan

    William Belmont Backs and Louise Nuxoll-Backs Trust

    Bethesda Inc.

    Patricia Heekin Briggs

    Buckeye Foundation

    Denise and Dave Bunning

    Mr. & Mrs. Ralph R. Burchenal

    Estate of Dorothy S. Campbell

    CancerFree KIDS Pediatric Cancer Research

    Shannon and Lee Carter

    These generous donors have made gifts totaling $1 million $4.99 million.

    1883 Society

    Bill and Melinda Gates Foundation

    Boomer Esiason Foundation

    Mrs. Lela C. Brown

    Children's Miracle Network

    Cincinnati Children's Employees

    Convalescent Hospital for Children

    The Cooperative Society

    Fifth Third Bank and Fifth Third Foundation

    The Greater Cincinnati Foundation

    Junior Co-Operative Society

    Kindervelt of Cincinnati Children's Hospital Medical Center

    March of Dimes Foundation

    William Cooper Procter

    John J. & Mary R. Schiff Foundation

    Estate of Ralph J. Stolle

    Toyota

    Western & Southern Open

    These generous donors have made giftstotaling $5 million or more.

    ChildrensHospital_AnnualReport_Insides_FA2.indd 49 12/9/14 12:41 PM

  • Childrens Heart Assocation of Cincinnati

    Childrens Tumor Foundation

    Dr. Douglas F. Clapp

    Mary Ellen and Tom Cody

    Mr. Reed L. Coen

    Robin T. Cotton and Cynthia Fitton

    Dr. and Mrs. Alvin H. Crawford

    Crohns & Colitis Foundation of America

    CURED

    Cystic Fibrosis Foundation (National Headquarters)

    Charles H. Dater Foundation

    Deloitte

    Doris Duke Charitable Foundation

    Mr. & Mrs. James M. Ewell

    Henry and Elaine Fischer

    Michael and Suzette Fisher

    The Fitch Family

    The Flaherty Family

    Fondation Leducq

    Food Allergy Initiative

    Robert B. Gardner Trust

    General Electric Evendale Employees Community Service Fund

    The Gerber Foundation

    Emma Margaret Goldman Trust

    Estate of Irving Goldman

    The Scott and Carolyn Hamlin Family

    Marjory J. Johnson Trust

    Ms. Lyn M. Jones

    Josh Cares

    Estates of Molly and Sam Kaplan

    Ida C. Kayser Trust

    Robert T. Keeler Foundation

    Dorothy M. M. Kersten Trust

    Kohls Cares

    The Leukemia & Lymphoma Society-Southern Ohio

    Carl and Edyth Lindner Family

    PAGE 47CINCINNATI CHILDRENS

    HB, EW and FR Luther Foundation

    Ruth Lyons Childrens Fund

    Dr. Lester W. Martin

    Mr. and Mrs. Manuel D. Mayerson

    Robert and Sally McLaurin

    Dr. and Mrs. Nelson Melampy

    The Oxley Foundation

    Joe and Susan Pichler

    Mr. and Mrs. Geoffrey Place

    The Procter & Gamble Company

    Estate of Lova D. Riekert

    Estate of Dr. George Rieveschl, Jr.

    Robert Wood Johnson Foundation

    Dr. Jack Rubinstein Foundation for Developmental Disorders

    The Robert C. and Adele R. Schiff Family Foundation

    Estate of Leroy E. Schilling

    Roger P. and Nancy L. Schlemmer

    Charlotte R. Schmidlapp Fund, Fifth Third Bank, Trustee

    Jacob G. Schmidlapp Trusts, Fifth Third Bank, Trustee

    Marge & Charles J. Schott Foundation

    Dr. and Mrs. Curtis A. Sheldon

    Michael M. Shoemaker Trust

    Estate of Louis M. Sloan

    Hannah Jo Smith Research for Leukemia Foundation

    Speedway LLC

    St. Baldricks Foundation

    Mr. & Mrs. Joseph Stern, Jr.

    The Sunshine Charitable Foundation

    Mrs. Mary Louise Tecklenburg

    Mr. G. Richard Thomas

    TriHealth Corporate Offices

    Walmart/Sams Club Associates and Customers

    Louise A. Williams Trust

    Louise S. Wilshire Trust

    Mike and Amy Zicarelli

    ChildrensHospital_AnnualReport_Insides_FA2.indd 50 12/9/14 12:41 PM

  • PAGE 48 CINCINNATI CHILDRENS

    Circle of Champions ($100,000+)

    The Matthew and Andrew Akin FoundationAnonymous (5)Mrs. Carol H. ArmstrongThe John A. and Marlene L. Boll FoundationMrs. Lela C. BrownBuckeye FoundationDenise and Dave BunningRobert Rogan Burchenal FoundationMary Ellen and Tom CodyCUREDMs. Kathleen C. DalyDSM Downs LLC in honor of G. Richard ThomasThe Farmer Family FoundationMr. and Mrs. Richard T. FarmerMr. and Mrs. Scott D. FarmerHenry and Elaine FischerMichael and Suzette FisherThe Flaherty FamilyCharles R. Gardner TrustMr. and Mrs. Park N. Gilmore

    The Greater Cincinnati FoundationMr. and Mrs. Richard L. HildboldJewish Federation of CincinnatiMr. and Mrs. Richard H. KantorThe Kulkarni FamilyCarl and Edyth Lindner FamilyMr. Randall L. MiddletonThe Ponzio Family FoundationMr. and Mrs. Craig A. PonzioJane and Rob PortmanMs. Suzanne S. ReidMr. and Mrs. David L. ScheperJohn J. & Mary R. Schiff FoundationMr. Thomas R. SchiffThe Sunshine Charitable FoundationMrs. Mary Louise TecklenburgMrs. Virginia WilloughbyNancy and David WolfMike and Amy Zicarelli

    FY14 Annual Report Honor RollHere we recognize the patients, families, staff, friends,

    companies and community organizations who have made gifts

    of $50,000 or more in fiscal year 2014. Thank you for your

    support of Cincinnati Childrens.

    Individuals and Family Foundations

    Corporations, Foundations, Auxiliaries and Other NonprofitsAlexs Lemonade Stand FoundationAnonymousCasey Lee Ball FoundationBethesda Inc.CancerFree KIDS Pediatric Cancer ResearchCassidy Turley Office Tenant Advisory GroupChildrens Heart Assocation of CincinnatiChildrens Miracle NetworkChildrens Tumor FoundationClearArc Capital Inc.Convalescent Hospital for Children

    The Cooperative SocietyDeloitteDeskey Associates Inc.Doris Duke Charitable FoundationBoomer Esiason FoundationEthicon Endo-SurgeryFifth Third Bank and Fifth Third FoundationBill and Melinda Gates FoundationThe Gerber FoundationIacono Production Services, Inc.Dr. Jack Rubinstein Foundation for Developmental Disorders

    ChildrensHospital_AnnualReport_Insides_FA2.indd 51 12/9/14 12:44 PM

  • The Cooperative SocietyDeloitteDeskey Associates Inc.Doris Duke Charitable FoundationBoomer Esiason FoundationEthicon Endo-SurgeryFifth Third Bank and Fifth Third FoundationBill and Melinda Gates FoundationThe Gerber FoundationIacono Production Services, Inc.Dr. Jack Rubinstein Foundation for Developmental Disorders

    John A. Schroth Family Charitable Trust, PNC Bank, TrusteeJosh CaresJunior Co-Operative SocietyKindervelt of Cincinnati Childrens Hospital Medical CenterKohls CaresMeshewa Farm FoundationMesser Construction Co.Ohio National Financial ServicesThe Procter & Gamble CompanyCharlotte R. Schmidlapp Fund, Fifth Third Bank, TrusteeJacob G. Schmidlapp Trusts, Fifth Third Bank, Trustee

    Ryan Seacrest Foundation Inc.Speedway LLCSt. Baldricks FoundationSusan G. Komen for the CureToyotaTriHealth Corporate OfficesUnited Way of Greater CincinnatiWalmart/Sams Club Associates and CustomersWestern & Southern OpenWhitehall Foundation, Inc.

    PAGE 49CINCINNATI CHILDRENS

    Circle of Promise ($50,000-$99,999)

    Annie W. & Elizabeth M. Anderson FoundationAnonymous (3)Mr. and Mrs. Michael CambronThe Ficks Family FoundationMr. John S. FicksMr. Philip L. FicksRichard A. GerbhardtThe Scott and Carolyn Hamlin Family

    Mr. and Mrs. David C. HornJohnson Charitable Gift FundLiams Lighthouse FoundationMrs. Nancy M. MillerHannah Jo Smith Research for Leukemia FoundationMr. John C. Smith, Jr.Albert and Liza SmithermanSophies Angel Run

    Individuals and Family Foundations

    Corporations, Foundations, Auxiliaries and Other NonprofitsAnonymousChameleon Learning Group LLCCharles H. Dater FoundationChimerix, Inc.Cincinnati-Northern Kentucky Honda DealersInsuring The ChildrenJostin Construction, Inc.

    George and Margaret McLane FoundationMercedes-Benz of Cincinnati, LLCMitsubishi Electric America FoundationMuscular Dystrophy Association, Inc.PNC FoundationRCF GroupWestern & Southern Financial Group

    Special Events and Community OrganizationsThese events raised $50,000 or more in FY 2014.

    Circle of Champions ($100,000+) Circle of Promise ($50,000-$99,999)

    Cincinnati Walks for KidsCelestial BallFifth Third Bank Tee Off for Project SEARCHPassport to ForeverRuth Lyons Childrens FundWestern & Southern Open

    Cincinnati Golfers for CharityLOL for HLHMesser Construction*Sophies Angel RunStarShine Hospice Golf ClassicThe Warrior Run: The Race for Life

    *Cincinnati Walks for Kids Team

    ChildrensHospital_AnnualReport_Insides_FA2.indd 52 12/9/14 12:45 PM

  • OUR LEADERSNote: Lists reflect leadership as of June 30, 2014

    Officers of the Board

    Thomas G. Cody, Esq.

    Michael Fisher

    Vicki L. Davies

    Elizabeth A. Stautberg, Esq.

    Chairman

    President and Chief Executive Officer

    Treasurer

    Secretary

    Board of Trustees

    Sharry P. Addison

    Robert D. H. Anning

    Carol Armstrong

    Richard G. Azizkhan, MD

    Lynwood L. Battle

    Maureen Bisognano

    Michael Cambron

    Willie F. Carden Jr.

    Lee A. Carter

    Thomas G. Cody, Esq.

    David Dougherty

    Nancy Krieger Eddy, PhD

    Michael Fisher

    Vallie Geier

    Louis George

    Beth Guttman

    Deb Henretta

    Michael A. Hirschfeld, Esq.

    Mark Jahnke, Esq.

    Joyce J. Keeshin

    M. Denise Kuprionis, Esq.

    Peggy Mathile

    Jane Portman

    John Steinman

    Arnold W. Strauss, MD

    Pamela Terp

    Felicia Williams

    Craig Young

    Trustees Ex Officio

    Rt. Reverend Thomas Breidenthal

    S. Kay Geiger

    Gary Doc Huffman

    PAGE 50 CINCINNATI CHILDRENS

    Trustees Emeriti

    Ralph Burchenal

    Barbara J. Fitch

    Geoffrey Place

  • M. Denise Kuprionis, Esq.

    Peggy Mathile

    Jane Portman

    John Steinman

    Arnold W. Strauss, MD

    Pamela Terp

    Felicia Williams

    Craig Young

    Foundation Board

    S. Kay eiger Co Chair

    ary Doc u man Co Chair

    Kit Andre s

    Michael D. arnes, Esq.

    Thomas rennaman

    ret Caller

    Da id Cassady

    Thomas . Cody, Esq.

    Al in . Cra ord, MD

    Da id Ellis,

    ar ara Fitch

    o ert ramann

    eth uttman

    Michael A. irsch eld, Esq.

    o ert S. Kahn, MD, MP

    Samir J. Kul arni

    Patric a ey

    Jonathan a head

    Peggy Mathile

    Phyllis McCallum

    Michael Mc ra

    John P. Perentesis, MD, FAAP

    Jane Portman

    J. Scott o ertson

    James Sch a

    William D. Sherman

    i a Smitherman

    Peter S. Strange

    Kathryn Ann Weichert Kran uhl, MD

    Allen aring,

    James immerman, Esq.

    PAGE 51CINCINNATI CHILDRENS

    u i iari

    ancy SorgPresident, The Cooperati e Society

    Kathy CassadyPresident, Junior Co perati e Society

    Charlotte Mc rayerPresident, Kinder elt

  • Senior Management

    Michael FisherPresident and Chief Executive Ofcer

    Richard G. Azizkhan, MDSurgeon-in-Chief

    Elisabeth Baldock, PhDSenior Vice President, Human Resources

    Brian D. Coley, MDRadiologist-in-Chief

    Jennifer DauerSenior Vice President, Strategy and Growth

    Michael K. Farrell, MDChief of Staff

    Scott J. HamlinChief Operating Ofcer

    Cheryl Hoying, PhD, RNSenior Vice President, Patient Services

    Marianne F. JamesChief Information OfcerSenior Vice President, Information Services

    William M. KentSenior Vice President, Infrastructureand Operations

    Uma R. Kotagal, MDSenior Vice President, Quality, Safety and Transformation

    Charles Dean Kurth, MDAnesthesiologist-in-Chief

    Mark MumfordChief Financial OfcerSenior Vice President, Finance

    Frederick Ryckman, MDSenior Vice President, Medical Operations

    James A. SaporitoSenior Vice President, Development

    Elizabeth A. Stautberg, Esq.General CounselSenior Vice President, Legal and Public Affairs

    Arnold W. Strauss, MDPhysician-in-ChiefChair, Department of Pediatrics, University of CincinnatiDirector, Cincinnati Childrens Research Foundation

    PAGE 52 CINCINNATI CHILDRENS

  • Raya, age 10This is based on Rayas

    drawing of happy, healthy

    families.

    CINCINNATI CHILDRENS PAGE 53

  • FINANCIAL REPORTFiscal Year July 1, 2013 June 30, 2014

    (Dol lars in Thousands)OPERATING REVENUES AND EXPENSES

    FY 2014 FY 2013OPERATING REVENUES

    Net Hospital Patient Services Revenue $1,435,526 $1,332,851

    Capitation Revenue 35,032

    Professional Services Revenue 289,064 263,380

    Research Grants 163,071 157,693

    Other Operating Revenue (includes philanthropy) 197,547 177,581

    TOTAL OPERATING REVENUES $ 2,120,240 $ 1,931,505

    OPERATING EXPENSES

    Salaries and Benefits $1,246,876 $1,162,116

    Services, Supplies and Other 577,580 491,944

    Depreciation 109,214 110,378

    Interest 14,170 14,247

    FY 2014 FY 2013

    TOTAL OPERATING EXPENSES $ 1,947,840 $ 1,778,685AVAILABLE TO REINVEST IN THE MISSION $ 172,400 $ 152,820

    PAGE 54 CINCINNATI CHILDRENS

  • CONDENSED BALANCE SHEET

    FY 2014 FY 2013ASSETSCash and Cash Equivalents $156,830 $249,190

    Marketable Securities 389,139 259,916

    Patient Accounts Receivable, Net of Allowances 288,806 223,850

    Other Current Assets 184,438 132,255

    CURRENT ASSETS $1,019,213 $865,211Property and Equipment, Net of Accumulated Depreciation 998,397 908,535

    Funds Held in Trust 38,097 62,803

    Other Long-term Assets 61,128 65,873

    Interest in Net Assets of Supporting Organizations 1,298,688 1,111,650

    TOTAL ASSETS $3,415,523 $3,014,072

    LIABILITIES AND NET ASSETS

    LIABILITIESAccounts Payable and Accrued Expenses $299,667 $239,891

    Current Portion of Long-term Debt 32,609 26,995

    CURRENT LIABILITIES 332,276 266,886Long-term Debt 467,542 494,274

    Other Long-term Liabilities 206,629 286,807

    TOTAL LIABILITIES $ 1,006,447 $ 1,047,967NET ASSETS Unrestricted Net Assets 975,039 710,714

    Temporarily Restricted Net Assets 153,309 170,437

    Permanently Restricted Net Assets 1, 2 8 0 , 7 2 8 1, 084,954

    TOTAL NET ASSETS $2,409,076 $ 1,966,105TOTAL LIABILITIES AND NET ASSETS $3,415,523 $3,014,072

    PAGE 55CINCINNATI CHILDRENS

  • FY 2014 FY 2013 FY 2012 FY 2011 FY 2010STATISTICAL HIGHLIGHTS

    PATIENTSAdmissions (includes short stay) 30,848 30,804 30,579 30,951 32,981

    Average Length of Stay (days) 5.0 4.8 4.7 4.4 4.1

    Emergency Department Visits 99,839 127,376 124,274 121,875 125,130

    Patient Encounters 1,191,880 1,170,129 1,144,858 1,087,260 1,078,798

    OUTPATIENT VISITSPrimary 80,108 78,905 65,347 65,446 65,915

    Specialty 864,393 828,743 832,317 797,280 793,814

    Test Referral Center 76,539 63,403 65,247 29,868 28,374

    SURGICAL PROCEDURESInpatient Cases 6,526 6,237 6,365 6,141 5,667

    Outpatient Cases 25,325 25,951 27,094 26,168 25,492

    Surgical Hours 43,954 45,655 44,240 42,874 40,825

    PEOPLEActive Medical Staff 1,734 1,493 1,572 1,516 1,498

    Total Employees 14,973 13,852 12,932 12,654 12,368

    Full-time Equivalents 12,681 11,799 10,976 10,781 10,455

    PAGE 56 CINCINNATI CHILDRENS

  • CINCINNATI CHILDRENS PAGE 57CINCINNATI CHILDRENS

  • ChildrensHospital_AnnualReport_Insides_FA2.indd 61 12/9/14 12:20 PM

  • THANKS FOR YOUR INSPIRATION!Our heartfelt thanks to the many children of our community whocontributed their beautiful ideas, inspiration and artwork to thisannual report:

    Patients at Cincinnati Childrens Childrens for Children daycare center Third-grade art class at our partner school,

    Rockdale Academy, Cincinnati, OH Fifth-grade Advanced and Creative Talents classes at

    Mason Intermediate School, Mason, OH

    Due to space limitations, we were not able to include all the artworkwe received. To see all the drawings, go online to:

    http://www.pinterest.com/cincychildrens/children-contribute-art-to-2014-annual-report/

    Produced byDepartment of Marketing and Communications

    Cincinnati Childrens Hospital Medical Center

    Jane Garvey, Vice President

    WritersMary Silva, Managing EditorTimothy Bonfi eldTom ONeillSarah Stankorb

    PhotographyTine HoffmanJonathan Willis

    Additional photos from theCincinnati Childrens archive

    DesignPROCLAMATION

    PRODUCTION CREDITS

    ChildrensHospital_AnnualReport_Covers-Spine_FA.indd 2 12/9/14 12:22 PM

  • 2014 Annua l Repor t3333 Burnet Avenue Cincinnati, OH 45229-3026

    www.cincinnatichildrens.org

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