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Poster Display session 3

3355 - COMPRAYA: Dutch nationwide infrastructure for COMPRehensive health outcome and intervention research among patients with Adolescent and Young Adult cancer

Date

30 Sep 2019

Session

Poster Display session 3

Topics

Cancer in Adolescents and Young Adults (AYA)

Tumour Site

Presenters

Olga Husson

Citation

Annals of Oncology (2019) 30 (suppl_5): v671-v682. 10.1093/annonc/mdz263

Authors

O. Husson1, M. Ligtenberg2, L.V. van de Poll-Franse3, J.B. Prins4, M.J. van den Bent5, M.C. van Eenbergen6, E. Manten-Horst7, R.M. Bijlsma8, S.J.E. Kaal9, J.M. Tromp10, A. Verschoor11, M.E.M.M. Bos12, J. Nuver13, Y. Jauw14, R.I. Lalisang15, S. Sleeman7, C. Vlooswijk6, J.A. Gietema16, W.T. van der Graaf17

Author affiliations

  • 1 Psychosocial Research And Epidemiology, Netherlands Cancer Institute/Antoni van Leeuwenhoek hospital (NKI-AVL), 1066 CX - Amsterdam/NL
  • 2 Human Genetics And Pathology, Radboud University Medical Center, 6525 GA - Nijmegen/NL
  • 3 Department Of Psychosocial Studies And Epidemiology, Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam/NL
  • 4 Medical Psychology, Radboud University Medical Center, 6525 GA - Nijmegen/NL
  • 5 Neurologie, Erasmus MC Daniel den Hoed Cancer Center, 3075 EA - Rotterdam/NL
  • 6 Research, Netherlands Comprehensive Cancer Center, Utrecht/NL
  • 7 Research, National AYA "Young and Cancer" Platform, Utrecht/NL
  • 8 Medical Oncology, UMC - University Medical Center Utrecht, 3584 CX - Utrecht/NL
  • 9 Medical Oncology, Radboud University Medical Center, 6525 GA - Nijmegen/NL
  • 10 Medical Oncology, Amsterdam Medical Center, Amsterdam/NL
  • 11 Medical Oncology, Leids Universitair Medisch Centrum (LUMC), 2333 ZA - Leiden/NL
  • 12 Medical Oncology, ErasmusMC, Rotterdam/NL
  • 13 Medical Oncology, University Medical Center Groningen, 9713 GZ - Groningen/NL
  • 14 Hematology, Vrije University Medical Centre (VUMC), 1081 HV - Amsterdam/NL
  • 15 Internal Medicine Medical Oncology Dept, Maastricht University Medical Center (MUMC), 6229 HA - Maastricht/NL
  • 16 Medical Oncology, University Hospital Groningen (UMCG), 9700 RB - Groningen/NL
  • 17 Medical Oncology, Netherlands Cancer Institue - Antoni van Leeuwenhoek Hospital, Amsterdam/NL

Resources

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Abstract 3355

Background

Compared to children, Adolescent and Young Adult (AYA) cancer patients, diagnosed with cancer between 18-39 years old, more often suffer from delay in diagnosis and lack of centralization of care, age-specific expertise and structured follow-up. This group presents with a unique spectrum of cancers with distinctive tumor biology, cancer risk factors, and psychosocial developmental challenges. The potential burden of medical and psychosocial problems could result in compromised quality of life and reduced life expectancy. Given the differences, findings derived from childhood cancer patients cannot be extrapolated to AYA cancer patients. It is imperative for advances in the field of AYA oncology to pool data sources (patient-reported outcomes, clinical, genetic and biological data) across institutions and create large cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population. Therefore, we will create a unique nationwide infrastructure (COMPRAYA) for research into the prevalence, predictive and prognostic markers and underlying mechanisms of early and late medical and psychosocial outcomes, and to facilitate the development and testing of (early) intervention strategies to improve these outcomes for patients (at risk).

Trial design

An observational cohort of 1-year AYA cancer survivors (N = 4000), recruited over 4 years, followed prospectively, will be established. Patients are asked to (1) complete validated patient-reported outcome measures; (2) donate a blood, hair, urine and stool sample; (3) consent for biobanking of tumor tissue and serial clinical data extraction from medical records and Netherlands Cancer Registry; (4) visit an outpatient clinic (vital and phenotypic parameters); (5) be approached for ancillary studies. The established Dutch AYA cancer care network forms an optimal collaborating environment. Next to the COMPRAYA research infrastructure, an online AYA platform will be created together with and for AYA cancer patients where age-specific information, support and interventions will become available.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital.

Funding

KWF Kanker Bestrijding.

Disclosure

All authors have declared no conflicts of interest.

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