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I N S I D E T H I S
I S S U E :
Report from fifth
PanCare meeting in
Paris
2
Treatment Recon-
struction
3
Nordic Childhood
Cancer Study
4
SCOH, Sofia 5
Invitation to Mainz 6
Dear all, dear friends, PanCare continues to grow and prosper, with an ever-expanding member-ship, and increasing number of activities and projects. Our first application to the European Commission, called PanCareSurFup and described in the last (May) newsletter, was approved by the EU. We are now in the negotiation phase, revising our budgets and responding to review-ers’ comments on both the research plan and the ethical issues. This is a great step forward, and the Steering Committee thanks all participants most sincerely for their out-standing contributions. Unfortunately, our application to the COST Programme (Edit Bárdi, coordina-tor), was not approved to go to the second stage. A resubmission is planned. This project was described in the last newsletter. PanCare’s fifth meeting in Paris was hosted by Florent de Vathaire and was a great success. Even volcanic ash clouds could not prevent our members from attending! Our sixth meeting is in Mainz from 15 to 17 September, hosted by Desiree Grabow. We look forward to seeing you all there. See page 6 of this newslet-ter for the letter of invitation. Best wishes! For the Steering Committee: Lars Hjorth, Lund (Chairperson) Riccardo Haupt, Genova Rod Skinner, Newcastle
NEXT PANCARE MEETING
The entire PanCare Network is invited to our 6th meeting in Mainz, Germany, hosted by De-
siree Grabow, German Childhood Cancer Registry. The meeting will start at noon, Wednesday
15 September and conclude at noon on Friday 17 September. For more information contact
Desiree at [email protected]. See page 6.
G R E E T I N G S F R O M T H E S T E E R I N G C O M M I T T E E
PanCare Newsletter
Volume 2
Issue 2
No. 4
June, 2010
Editor: Julie Byrne, Ire-
land
Editorial Board: Tomas Kepak, Czech Re-
public
Alexandra Brownsdon, UK
Herwig Lackner, Austria
Zsuzsanna Jakab, Hungary
Thorsten Langer, Germany
Els Vandecruys, Belgium
Gisela Michel, Switzer-
land
www.pancare.eu
June, 2010 Volume 2, Issue 2, No. 4
Organization
SIOP: The International Society of Paediatric Oncology (SIOP) will meet in Boston, Massachu-
setts, for the 42nd Annual Congress, October 21-24, 2010. http://www.siopboston2010.com/
M E E T I N G S … . . M E E T I N G S … .
2011 Seventh PanCare Meeting: Tomas Kepak has kindly invited the entire PanCare network
to Brno, Czech Republic, in April 2011. Details to follow.
P A N C A R E N EWS L E T T E R
P A N C A R E N E W S L E T T E R
Update on PanCareSurFup (L. Hjorth), we were successful out of 460 proposals. Negotiations start in late May, with research kick-off on 1 February, 2011. Includes 8 Work Packages, comprising 1) Data Collection and Harmonization (Desirée Grabow); 2) Radiation Dosimetry (Florent de Vathaire), 3) Cardiac Disease (Leontien Kremer, including case-control study and evaluation of risk factors); 4) Secondary malignant neoplasms (Mike Hawkins); 5) Late Mortality (Stanislaw Garwicz); 6) Guide-lines, follow-up and transition (Roderick Skinner); 7) Dissemination and Training (Momcilo Jankovic); 8) Management and Coordination will be led by Lars Hjorth in Lund.
A talk on the SIOPE-sponsored, and EU-approved project ENCCA European Network for Cancer Re-search in Children and Adolescents (R. Haupt).
ERA-Net Priomedchild (R. Haupt) A proposal to the EU, now passed the first stage, for Outcomes after Lymphoblastic Leukemia in Infancy.
Research Topics
A talk by Liedeke Postma (Groningen, NL) on a web based cancer survivor care plan.
Gisela Michel described the Ambizione Project Project consisting of three parts: 1) Existing programmes of follow-up care in Europe; 2) Current use of follow-up care in Switzerland 3): Preferences and opin-ions about follow-up care in Switzerland
SurvivorNet (A Brownsdon)
Presentations for Williamsburg (L. Hjorth & E. Bárdi)
What is treatment reconstruction?: I Diallo (INSERM) (See abstract in Newsletter on page 3)
Childhood Cancer in Nordic Countries. (J Falck Winther) (See abstract in
Newsletter on page 4)
Survivorship Passport: The Italian model (R Haupt)
Evidence-based late effects (L Kremer);
The structure of PanCare (E Sugden, J Byrne)
PanCare newsletter & website (J Byrne, T Kepak)
New ideas/group established to serve as facilitators of new ideas and projects
New projects
Optimising growth after medulloblastoma treatment (E Sugden)
Exchange of PhD students (C Kuehni)
Planned new study about health in children of childhood cancer survivors (C Kuehni, A Borgmann)
Assessing quality of survivorship (M-C Simeoni).
NOTE: Minutes and presentations are on the PanCare website
www.pancare.eu
Estera Boeriu (Timişoara, Romania)
Marios Paulides, Erlangen
Anthony Penn, Bristol
From Hospital San Gerardo, Monza, L to R: An-tonella Colombini, Marco Spinelli, Momcilo Jankovic
Report from the Fifth PanCare meeting, 5-7 May, 2010, Paris, hosted by Florent de Vathaire.
Page 2
RADIATION DOSIMETRY: What is treatment reconstruction? Ibrahima Diallo
Partner 12. IGR, Institut Gustave Roussy, FR (Florent de Vathaire)
Radiation Epidemiology Group, CESP - Unit 1018 INSERM, Espace Maurice Tubiana, Institut Gustave Roussy, 39 rue Camille
Desmoulins, 94805 Villejuif Cedex [email protected]
The objective of radiation therapy (RT) is the irradiation of target volumes of tumour while sparing uninvolved organs. However, when high energy photon beams are used irradiation of peripheral healthy tissues cannot be avoided and may contribute to development of late iatrogenic effects. Treatment planning software that is used in all RT departments to evaluate the dose received lacks sufficient anatomical detail on the patient, including beam data and calculation models for tissues remote from the treatment region. It is for this reason that, for the last twenty years, our team at Institut Gustave Roussy (IGR) has been developing and improving specific, dedicated software aiming at individual patient retrospective estimations of the dose received during the first cancer RT at the site of the second cancer development. IGR software permits us to work closely with epidemiologists in order to fine-tune dose-response relationships. Our approaches involve measuring the dose both within and outside the beams. The software includes anthropomorphic models for the reconstruction of the whole body of the patient. Specific dose calculation algorithms for accurate evaluations of absorbed dose both within the beams and at a distance is also provided. However, dose reconstructions estimated decades after the initial treatment strongly depend on the availability and quality of individual patient medical records. Our approach allows whole-body dose evaluations and optimizations to be achieved for former patients included in epidemiological studies and also for current patients as a part of the usual treatment planning procedure. It should provide the relevant information required for radiotherapy risk-benefit management and for a general approach to radiation protection of the patient. This powerful tool is now available for treatment reconstruction.
The long-term
strategic aim
of PanCare is
to ensure that
every European
survivor of
childhood and
adolescent
cancer re-
ceives optimal
long-term care.
P A N C A R E N E W S L E T T E R Page 3
Biannual Conference of the Polish Society for Pediatric Oncology and Hematology From 26th until 29th of May 2010, in the lovely city of Międzyzdroje, Poland, the Vth Biannual Conference of the Polish Society for Pediatric Oncology and Hematology was held. Among many interesting topics concerning diagnosis and treatment for pediatric malignancies, a session dedicated to late effects after oncological treatment was held. Maryna Krawczuk- Rybak from Bialystok delivered a lecture on the general condition of pediatric cancer survivors (Pediatric cancer survivors- from childhood until old age) and Katarzyna Muszyńska-Rosłan, spoke about neurotoxicity in acute leukemia patients (Neurotoxicity in childhood ALL- „safe” chemotherapy). Three 3 papers on childhood cancer survivors were presented during the poster session. These were 1) Evaluation of the national programme for assessment of quality of life in pediatric cancer survivors; 2) Assessment of thyroid function in children after ceassation of treatment for malignancies, and 3) Assessment of cardiac and respiratory systems in pediatric cancer survivors.The next conference will be in Lodz (central Poland) in 2012.
Page 4 P A N C A R E N E W S L E T T E R
Supported by the Danish Research Council, the Nordic Childhood Cancer Study (ALICCS) will run for five years starting in 2010. The first step (ongoing) is to establish a large, retrospective, inter-Nordic childhood cancer cohort. The first objective is to compare the morbidity-specific incidence and cause-specific mortality within the cohort with that of a sample of the general Nordic population. All Nordic children and adolescents diagnosed with cancer before age 20 from start of the respective cancer registries in the 1940s and 1950s through 2008 will be followed forward. Figure 1 shows the registry linkages and information available. Because of the long enrolment
period and the collaborations, an extraordinarily large cohort of childhood cancer cases (n = 55 000) will be established, with a combined comparison cohort (n = 275 000). Accurate follow-up of patients and population controls will be achieved through the civil registration systems; morbidity data will come from record linkage. The combined dataset will constitute a new, comprehensive, powerful surveillance instrument for estimating relative and absolute risks for medically verified, chronic health conditions in childhood cancer survivors.
The second objective is to set up nested case-control studies of survivors and their offspring with the purpose of investigating associations, including dose-response, between specific treatment regimens and selected outcomes. Outcomes selected a priori are 1) cardiovascular and pulmonary diseases, 2) endocrine disorders and reproductive failures, and 3) renal and gastrointestinal disorders. Other disorders, to be identified in the first step, will also be studied. The strengths of this Nordic setting includes availability of personal identification numbers for all study subjects, a well-defined comparison cohort, high registration quality and a long registration period without any loss of follow-up, the latter being especially important for survivors above age 40 with little information at the moment on non-malignant outcomes. Project organization and management The Data Management and Analysis Centre will be hosted by the Institute of Cancer Epidemiology, and headed by Dr. Jørgen H Olsen, who is also the study coordinator of ALICCS (Figure 2). Jeanette Falck Winther, MD and senior researcher (pictured), is head of the Centre.
Participating organisations
1. Institute of Cancer Epidemiology, Danish Cancer Society, Copenhagen, Denmark 2. Paediatric Department, Skejby Hospital, Aarhus, Denmark 3. Swedish Cancer Registry, National Board of Health and Welfare, Stockholm, Sweden 4. Division of Paediatric Oncology and Haematology,
University Children’s Hospital, Lund, Sweden 5. Cancer Registry of Norway, Institute of Population-based
Cancer Research, Oslo, Norway 6. Finnish Cancer Registry, Cancer Society of Finland, Helsinki,
Finland 7. Unit of Paediatric Haematology and Oncology, Department
of Paediatrics, University of Turku, Turku, Finland 8. Icelandic Cancer Registry, Icelandic Cancer Society,
Reykjavik, Iceland 9. Department of Paediatric Haematology and Oncology,
Hospital for Children and Adolescents, Helsinki, Finland 10. Department of Cancer Epidemiology, Lund University, Lund,
Sweden
Goals To identify and characterize high-risk populations, as this information is critical for making evidence-based recommendations for long-term follow-up of survivors of childhood cancer. 2) To allow better planning of treatment protocols with fewer late effects, 3) to contribute to preventive intervention strategies, 4) to improve the basis for patient counselling, and 5) to educate a group of Nordic childhood oncologists and epidemiologists who will specialise in the identification and prevention of late effects after treatment for childhood cancer.
Nordic Childhood Cancer Study: Adult LIfe after Childhood Cancer in Scandina-
via (ALICCS) by Jeanette Falck Winther
Board of ALICCS
3 ANCR representatives
3 NOPHO representatives
WGWG WG…
Approval
Data Management and Analysis Centre
Cases from cancer registries;
two controls per case from population registers
Co-PI and Senior Researcher
Data manager and Statistical Support
DEN FIN ICE NOR SWE
PIs active in organizing working groups (WGs)
Co-PI (DEN) PI (FIN) PI (ICE) PI (NOR) PI (SWE)
National
data
linkages
Uploading af anonymized data
Figure 2
Figure 1
Page 5 P A N C A R E N E W S L E T T E R
SPECIALIZED CHILDREN'S ONCOHEMATOLOGY HOSPITAL
SCOH Ltd. Sofia 8, Byalo morestr., Sofia 1527, Bulgaria www.sbaldohz.com
From Ivaila Georgieva, Clinical psychologist, SCOH
The Specialized Children’s Oncohematology Hospital (SCOH Ltd. –Sofia) is a separate, highly specialized institution registered by Bulgarian commercial law. SCOH is the only separate hospital for paediatric haemato-oncology in Bulgaria, covering the full range of diagnostic and medical treatment activities for children with blood diseases and solid tumours from the ages of 0 to 18 . SCOH has established for the first time the only fully functioning tertiary care centre in Bulgaria for bone marrow transplantation (hematopoietic stem cell transplantation). Medical treatment In SHOH chemotherapy (anti-tumour medication) is applied to all malignant and other tumours and blood conditions of children and teenagers up to 18 years old. Other conditions suitable for transplant can also be treated at SCOH. The hospital has signed contracts with the National Health Insurance Company for hospitalization and the whole medical-diagnostic process during hospitalization is free of charge. In SCOH the full range of blood and biochemical parameters can be analyzed as well as tumour markers, flow cytometry analysis (immunophenotyping) of peripheral blood, bone marrow, microbiological analysis of blood, biological fluids and tissues. If additional analysis or consultation is needed, the patients are referred to contractual partners in leading centers in Sofia. Other activities SCOH provides the accompanying people with the possibility to accommodate in the Boarding-house on a hotel-like basis. The Boarding house has 18 beds in 6 double rooms and two bathrooms/lavatories is a new building close to the hospital. It is intended for the accompanying people, families and patients coming from the country. It offers cable TV, telephone and Internet. A team of qualified teachers offers the children from 1-st to 8-th
grade education consistent with the National curriculum. An opportunity is also afforded to get marks, grades and a certificate for educational degrees. Education of medical staff is carried out within the university and postgraduate programs. A state-owned primary school is functioning in SCOH.
The long-term
strategic aim of
PanCare is to
ensure that
every European
survivor of child-
hood and ado-
lescent cancer
receives optimal
long-term care.
From the Editor: This PanCare newsletter is intended to be a forum for news and updates on activities, a way for PanCare members to keep up with each other, to learn about new developments, and to participate in different activities. The Editor welcomes all submissions of interest to members, such as reports on European countries’ LTFU structures, methods and challenges, meeting announcements and reports, staff changes, new publications and suggestions for columns, features and photos. Please send submissions for future issues to the Editor at [email protected]
Life will never be the same,
but we can make it better
together…
Page 6 P A N C A R E N E W S L E T T E R
June, 2010
Dear PanCare members,
It is a pleasure to invite you to the 6th PanCare meeting hosted in the historic city of Mainz. Mainz is the capital city of the state Rhineland Palatinate situated at the river Rhine (near Frankfurt). The meeting will take
place from 2 pm on the 15th of September until 6 pm on 16th of September 2010.
We would be grateful if you could confirm as soon as possible if you are intending to come to the meeting. Please provide us with all necessary information such as name of participant, institution, when you will arrive and when you will leave. Please send this information to me at
Additionally, please make a reservation at the hotel by sending an e-mail to [email protected]
(phone +49 6131 58851-0; fax +49 6131 58851-200; keyword: “PanCare”).
To keep this Meeting on a manageable level (regarding locations and communication during the meeting) we feel impelled to restrict the number of participants to 50 persons. As in previous meetings, we are happy to be able to fund one night per person, the other nights and travel expenses shall courteously be covered by the participants themselves. In case of any problem please do not hesitate to contact us.
The venue of the meeting is located at the facilities of the University Medical Centre of Mainz. It is within walking distance from your accommodation and will take about 20 minutes to reach the conference room. Nonetheless, for those of you who prefer a ride on the bus, this is a possibility as well.
On the morning of Wednesday 15th September all participants get the chance to travel to Mainz, refresh, and get prepared for the conference. Before starting, we provide a light lunch. The meeting will start at around 2 pm. and will end approximately at 6 p.m. The meeting will continue on Thursday 16 th at 9 am. and will continue until its conclusion at around 6 pm. The following day, Friday, 17th, will be devoted to project meetings; attendance will be limited to project participants.
In the evenings, we would like to take you out for nice traditional German dinners. As some of you might know, Rheinhessen and therefore Mainz, is Germany’s largest wine-growing city.
By the way, Johannes Gutenberg is one of Mainz’s native sons. He is the inventor of movable type printing. A visit to the birthplace of printing, the Gutenberg Museum is a „must“ for every visitor.
The Rhine-Main-Airport Frankfurt is around half an hour by train (which departs frequently) to and from Mainz. The agenda will follow with further details about this conference very soon.
We are looking forward to welcome you to Mainz and hope that the 6 th meeting will be as successful as the past ones.
Kind regards and best wishes,
Dr. Desiree Grabow
on behalf of Dr. Peter Kaatsch (Head of GCCR) and Prof. Maria Blettner
Institute for Medical Biostatistics, Epidemiology, and Informatics, (IMBEI)
German Childhood Cancer Registry (GCCR)
