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PPMI Retention Update Annual Investigators Meeting May 7 th , 2014 Danna Jennings, R&R Working Group Chair, PPMI Site PI Vanessa Arnedo, MJFF

PPMI Retention Update - ppmi-info.org · 6/20/2014  · –Packet of lay abstracts of results using PPMI data to be handed out at Retention Events ... Site Name # LPs completed %

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Text of PPMI Retention Update - ppmi-info.org · 6/20/2014  · –Packet of lay abstracts of results using...

  • PPMI Retention Update

    Annual Investigators Meeting May 7th, 2014

    Danna Jennings, R&R Working Group Chair, PPMI Site PI

    Vanessa Arnedo, MJFF

  • PPMI Status Update

    Cohort Enrolled Recruitment Status

    De Novo PD 423 Complete

    Controls 196 Complete

    SWEDDs 64 Complete

    Hyposmia 7 Ongoing

    RBD 11 Ongoing

    Genetic Cohort 8 Ongoing

    Genetic Registry 24 Ongoing

    Total 733 Active=710

    Goal: Retain subjects by keeping them engaged to participate in study visits over time – cultivate volunteers as key partners in the study

  • Retention Progress to Date

    • Overall study retention is 95%!

    • 10 sites with 100% retention: – Oregon Health & Science University

    – University of Washington

    – The Parkinson’s Institute

    – Baylor College of Medicine

    – University of South Florida

    – Johns Hopkins University

    – University of Cincinnati

    – Imperial College London

    – PD & Movement Disorders Center of Boca Raton

    – Macquarie University

  • Retention Strategies

    Goal: Maintaining the stamina and loyalty of enrolled subjects over time

    • Site Relationship with Subjects – maintaining relationship with participants, accommodating

    their needs

    • Annual Retention Events – Participant appreciation lunch/dinner – Opportunity to update participants on study status and

    published data

    • Scientific Update packet – Packet of lay abstracts of results using PPMI data to be handed

    out at Retention Events

    • Participant Newsletters – 2x per year – study updates and special profiles

  • Retention Strategies Cont.

    • Giveaways – PPMI token of appreciation at

    each study visit – T-shirts, thera-putty, umbrellas,

    etc. – Thank you book

    • 42 month giveaway, collection of Thank you letters

    • PPMI Study Update Calls – Quarterly calls featuring

    presentation by researcher on PPMI data, and Q&A session

    – Recordings available at www.ppmi-info.org/participants/

    – Next call: May 15th @ 1pm EST

  • PPMI Recruitment & Retention Working Group

    • Danna Jennings

    (Chair)

    • Alexandra Gaenslen

    • Carey Christiansen

    • Carlie Tanner

    • Daniela Berg

    • Christine Hunter

    • Tanya Simuni

    • Cathi Thomas

    • Hubert Fernandez

    • Zoltan Mari

    • Vanessa Arnedo

    • Karen Williams

    • Jim Leverenz

    • Claire Meunier

  • PPMI Patient Committee

    • Sheryl Jedlinski

    • Jean Burns

    • Peter Burne

    • Bill Shepard

    • Carey Christensen

  • PPMI Site Awards

    Recognizing site teams for outstanding effort

  • Prodromal Enrollment

    Site Name Hyposmic Enrolled

    RBD Enrolled Total Enrolled

    Barcelona 0 5 5

    UPenn 3 2 5

    OHSU 2 0 2

    Northwestern 0 2 2

    Kassel/Marburg 0 2 2

    IND 1 0 1

    Cleveland Clinic 1 0 1

    UAB 0 1 1

  • Top Prodromal Enrollment We have a tie!

    Hospital Clinic de Barcelona University of Pennsylvania

    Both sites have enrolled 5 Prodromal participants…Great Job!

  • Genetic Enrollment Site Name LRRK2

    Cohort Consented

    LRR2 Registry Consented

    LRRK2 Cohort Enrolled

    LRRK2 Registry Enrolled

    Total Enrolled

    Boca Raton 9 12 7 12 19

    Barcelona 7 12 3 11 14

    Emory 0 3 0 3 3

    Northwestern 1 0 1 0 1

    The PI 0 1 0 1 1

    Trondheim 5 0 0 0 0

    San Sebastian 4 0 0 0 0

    Cleveland Clinic 1 0 0 0 0

    Banner 1 0 0 0 0

    Upenn 0 1 0 0 0

  • Top Genetic Enrollment

    PD & Movement Disorders Center of Boca Raton

    7 enrolled in LRRK2 Genetic Cohort, 12 enrolled in LRRK2 Genetic Registry!

  • Top Rate of Genetic Enrollment

    Hospital Clinic de Barcelona

    3 enrolled in LRRK2 Genetic Cohort, 11 enrolled in LRRK2 Genetic Registry in 4 months!

  • Timely Data Entry (Over 85%)

    Site Name Pages Completed % Timely

    Barcelona 449 99.6

    IND 12,502 95.1

    UCSD 2,738 93.2

    Boston University 4,414 92.1

    Kassel/Marburg 4,954 90.9

    UAB 5,578 89.6

    Innsbruck 2,805 89.5

    The PI 4,595 89.2

    Upenn 5,038 88.3

    *Data is considered to be entered ‘timely’ if entered within 14 days of assessment

  • Top 3 Sites with Timeliest Data Entry

    Boston University

    In 3rd place, Boston University!

    Over 4,400 pages completed, 92.1% timely!

  • Top 3 Sites with Timeliest Data Entry

    University of California San Diego

    In 2nd place, University of California San Diego!

    Over 2,700 pages completed, 93.2% timely!

  • Top 3 Sites with Timeliest Data Entry

    Institute for Neurodegenerative Disorders

    In 1st place…we have a tie!

    Over 12,000 pages completed, over 95% timely!

    Hospital Clinic de Barcelona

    Of almost 450 pages completed, 99.6% were entered timely!

  • Expected Completion of Scheduled Assessments

    Site Name # LPs completed

    % Expected LPs Completed

    Macquarie 12 100

    Emory 77 99

    Cincinnati 25 96

    UPenn 82 94

    IND 191 93

    Imperial 24 92

    Banner 40 91

    Boca Raton 10 91

    Site Name % Expected Visits Completed

    IND 100

    OHSU 100

    Imperial 100

    Salerno 100

    Northwestern 98

    Cleveland Clinic 98

    UCSD 98

    The PI 98

    Baylor 98

    Upenn 97

    Tuebingen 97

    Kassel/Marburg 97

    Innsbruck 96

    Boston 96

    Sites with over 90% of Expected LPs Completed! Sites with over 95% of Expected Visits Completed!

  • Sites with 100% of Expected Visits Completed

    • Institute for Neurodegenerative Disorders

    • Oregon Health & Science University

    • Imperial College of London

    • University of Salerno

  • Excellence in Hyposmia Recruitment

    Banner Sun Health Research Institute

    This site has consented 50% of all referrals, and is a top site for number of surveys returned to the Olfactory Core

  • Most Likely to Contribute

    Karen Williams Northwestern University

    This site team member has been the most likely to contribute ideas and suggestions to the Monthly PPMI Operations/Recruitment and Retention Calls

  • Top Advocate for WRI

    Linda Rees Parkinson’s Institute

    This site team member has been the top advocate for the PPMI Genetic Widespread Recruitment Initiative in collaboration with the GCC team