Project News and Updates.

PanCare Videos

PanCare is a multidisciplinary pan‐European network of professionals, survivors and their families that aims to reduce the frequency, severity and impact of late side‐effects of the treatment of children and adolescents with cancer.

Survivors play a very important role in the network, so the PanCare team has prepared a video explaining the importance of listening to survivors.


The team has also produced a video explaining why curing cancer is not enough, highlighting the impact of late effects on survivors of childhood and adolescent cancer.

Autumn Newsletters from St. Jude’s

The latest newsletters from the Childhood Cancer Survivor Study and Long-Term Follow-Up Study are now available.

Learn more about the Advancing Survivors’ Knowledge (ASK) About Skin Cancer Study, meeting survivors’ health-related needs, the next wave of the Long-Term Follow-up Study and more!


20th PanCare Meeting

The 20th PanCare meeting was held 3 – 5 Oct 2017 in Luebeck, Germany, hosted by PanCareLIFE WP5 leader Thorsten Langer. The meeting covered a range of topics, including guidelines and practical consequences for endocrine long-term late effects, survivorship and long-term follow-up guidelines after stem cell transplantation. There were also updates from the PanCare EU projects, PanCareLIFE and PanCareSurFup. Dirk Deuster (UKM) gave an update on the PanCareLIFE ototoxicity study, and Elisabeth Korte and Magdalene Balcerek (CU) gave an update on the PanCareLIFE study on patient education in fertility preservation.

Children and Cancer: An Atlantic Forum

PanCareLIFE Research Manager Dr. Julianne Byrne (Boyne Research Institute) attended the Children & Cancer Forum last week in Washington, DC. The conference featured presentations and discussions by clinicians, researchers, parents and survivors, on topics ranging from immunotherapy to big data to survivors’ stories to underwriting.  The conference was sponsored by the AFLAC insurance company and was held in the Newseum on Pennsylvania Avenue, within sight of the US Capitol building.  Congressman Brian Higgins, chair of the House Cancer Caucus, spoke about how policy-makers like him need to be informed and educated about issues related to childhood cancer and survivorship.  The full video of the conference proceedings is available here.

Dr. Byrne, Boyne Research Institute and Margaret Low, President AtlanticLIVE, at Children & Cancer Forum

Sept 2017 PanCareLIFE Newsletter out now!

Check out all our latest news here!

25th Jubilee Tour of the Regenbogenfahrt/Rainbow Ride of the German Childhood Cancer Foundation

On August 25th 2017, the Rainbow Riders visited the German Childhood Cancer Registry (GCCR)* in Mainz on their tour from Trier / Aachen to Koblenz. Approximately 50 participants on the bicycle tour suffered from cancer in their childhood and adolescence. Now, with the Rainbow Ride, they provide a sign of hope and encouragement to children currently battling cancer and their parents. They visited the GCCR and the pediatric oncology center of Mainz University Hospital on their one-week 600-km jubilee tour to share their important journey.

The visit of the Rainbow Riders highlighted the importance of a nationwide collection of disease-specific data. Since 1980, the GCCR has collected data on all cancer cases in Germany in children under 15 years of age, with data from adolescents under 18 years of age being collected since the beginning of 2009. The registry currently receives about 2,100 reports of new disease each year. In addition, the GCCR carries out a systematic long-term follow-up. About 33,000 former childhood and adolescent cancer patients are regularly contacted by the GCCR to learn about their general health status and potential late-effects of their cancer in childhood and adolescence. The aim is to optimize future treatment methods and follow-up care.

It was very impressive to see how much strength and courage the Rainbow Riders provide to the children and adolescents who are currently affected by cancer. Both the Rainbow Riders and the hosts in Mainz will remember the visit fondly in years to come!

* The GCCR coordinates PanCareLIFE and participates in the PanCare network ( In both PanCareLIFE and PanCareSurFup (, the GCCR hosts the data centre (WP1), which is responsible for data collection and harmonisation for all datasets collected from the data providers in both EU-funded projects.

Pictures: Thomas Böhm (Universitätsmedizin Mainz)

Latest CCI newsletter

The latest Childhood Cancer International newsletter is out!

ESMO/SIOPE Cancer in Adolescents and Young Adults Working Group

Learn more about the Cancer in Adolescents and Young Adults Working Group, a collaboration between ESMO and SIOPE to combine expertise for a group of patients that represents a unique constellation, patients who are neither adults nor children.


15th International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer

PanCareLIFE was well represented at the 15th International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer this week in Atlanta, Georgia. The conference focused on the exchange of innovative ideas among international medical and pediatric oncologists (including fellows and residents), nurse practitioners, oncology nurses, and other associated allied health professionals. This year’s symposium presented the latest scientific and clinical advances regarding the science and ethics of genomic testing.

The following were presented by PanCareLIFE researchers:

  • THE PANCARELIFE* CONSORTIUM: HEARING LOSS, INFERTILITY AND QUALITY OF LIFE IN EUROPEAN CHILDHOOD CANCER SURVIVORS – Julianne Byrne, Helen Campbell, Claudia Kuehni, Riccardo Haupt, Tomas Kepak, Jarmila Kruseova, Claire Berger, Jeanette Falck Winther, Flora van Leeuwen, Sophie Fossa, Alison Leiper, Victoria Grandage, Herwig Lackner, Maryna Krawczuk-Rybak, Anna Panasiuk, Arndt Borkhardt, Marina Kunstreich, Holger Cario, Eline van Dulmen-den Broeder, Gabi Calaminus, Anja Borgmann-Staudt, Uta Dirksen, Stefanie Hecker-Nolting, Antoinette am Zehnhoff-Dinnesen, Joanna Stefanowicz, Marry van den Heuvel-Eibrink, Dalit Modan-Moses, Thorsten Langer, Gabriele Strauss, Leontien Kremer, Kylie O’Brien, Desiree Grabow, Peter Kaatsch
  • FERTILITY STUDIES IN PANCARELIFE: A PAN-EUROPEAN CONSORTIUM STUDYING LATE EFFECTS OF CHILDHOOD CANCER – Marloes van Dijk, Marleen van den Berg, Julianne Byrne, Leontien Kremer, Helen Campbell, Claudia Kuehni, Vera Morsellino, Tomas Kepak, Jarmila Kruseova, Claire Berger, Sophie Fossa, Alison Leiper, Victoria Grandage, Flora van Leeuwen, Gabi Calaminus, Anja Borgmann-Staudt, Uta Dirksen, Dalit Modan-Moses, Jeanette Falck Winther, Kylie O’Brien, Desiree Grabow, Peter Kaatsch, Marry van den Heuvel-Eibrink, Eline van Dulmen-den Broeder
  • GENETIC DETERMINANTS OF GONADAL IMPAIRMENT IN FEMALE CHILDHOOD CANCER SURVIVORS: A PANCARE LIFE STUDY – A.L.F. van der Kooi, M. van Dijk, L. Broer, M. van den Berg, R. Haupt, K. Kepakova, J. Kruseova, C. Berger, F. van Leeuwen, S. Fössa, U. Dirksen, J.S.E. Laven, L.C. Kremer, D. Modan,  E. Clemens, P. Kaatsch, J. Byrne,  A. de Vries, A.G. Uitterlinden, E van Dulmen-den Broeder, M.M. van den Heuvel-Eibrink on behalf of the PanCareLIFE consortium
  • GENETIC VARIATION OF CISPLATIN-INDUCED OTOTOXICITY DURING CHILHDOOD CANCER TREATMENT: A PANCARELIFE STUDY – E. Clemens, T. Langer, L. Broer, A.G. Uitterlinden, B. Carleton, A.C.H. de Vries, C. Kuehni, R. Haupt , T. Kepak, J. Kruseova, J.F. Winther, L.C. Kremer, A.L.F. van der Kooi, D. Grabow, H. Binder, A. am Zehnhoff-Dinnesen, J. Byrne, P. Kaatsch, M.M. van den Heuvel-Eibrink and O. Zolk on behalf of the PanCareLIFE consortium
  • DEVELOPMENT AND VALIDATION OF A RISK MODEL FOR PREDICTING PLATINUM OTOTOXICITY IN CHILDHOOD CANCER PATIENTS: A PANCARELIFE STUDY – T. Langer, A. am Zehnhoff-Dinnesen, E. Clemens, L. Broer, A.G. Uitterlinden, A.C.H. de Vries, C. Kuehni, R. Haupt, T. Kepak, J. Kruseova, J.F. Winther, L. Kenborg, L.C. Kremer, A.L.F. van der Kooi, S. Hecker-Nolting, D. Grabow, H. Binder, J. Byrne, P. Kaatsch, M.M. van den Heuvel-Eibrink, O. Zolk, T. Paul, on behalf of the PanCareLIFE consortium
  • RISK FACTORS FOR NEGATIVE PSYCHOLOGICAL OUTCOME IN SURVIVORS AFTER CANCER TREATMENT IN CHILDHOOD – Kruseova J., Keslova P., Reichlova V., Smelhaus V., Kabickova E., Luks A., Capek V., Starý J., and Calaminus G.

EMC Team on Roparun

This May, PanCareLIFE resaerchers Anne-Lotte van der Kooi and Eva Clemens ran from Paris to Rotterdam to raise money for people who suffer from cancer. The Roparun is a relay race of approximately 520 km. Their team consisted of colleagues from the Department of Pediatric Oncology, friends and survivors. Approximately 25 people, including runners, cyclists, drivers, caterers, and medics participated on the run. They raised over 6,500 euro.