Research Opportunities for Teenage and Young Adult Cancer Patients


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Amos Burke1,Shamaila Anwar1,Jonathan Gower1,Matthew Seymour1
1NIHR Clinical Research Network

Abstract

Background

We reviewed the NIHR portfolio of open cancer studies in 2015/16 to determine how many were potentially available to the teenage and young adult (TYA) patient population nationally, and in each Local Network (LN) including the devolved nations.

Method

Studies were designated ‘TYA-relevant’ if for a disease with a major incidence in the TYA population; of these, ‘core’ studies were those likely to recruit at least one TYA patient per LN annually or be a front-line or a cross-cutting study (e.g. genetic, biomarker studies). Early phase studies were included for the highest incidence diseases. NCRI Clinical Studies Groups (CSGs) were asked to validate the designations.

Results

Of 775 cancer portfolio studies open during 2015/16, 89 were designated ‘TYA-relevant’, and 60 of these ‘core’. Within each LN, the number of open TYA-relevant ‘core’ studies was median 39[26], range 13[10]–69[47]. The number of studies in specific cancer types was: 2 lymphoma; 4 leukaemia; 35 carcinoma; 6 sarcoma; 5 brain tumours; 3 melanoma; 2 testis; 3 others . TYA-relevant cancer types with few or no relevant studies were identified, including Hodgkin lymphoma, most carcinomas (except breast colon and lung) and germ cell tumours.    

Conclusion

Participation of TYA cancer patients in research is reported to be lower than for other age groups. Availability of relevant studies is likely to be a major contributing factor. Our analysis of the NIHR cancer portfolio shows a significant number of studies available for TYA participation with some notable gaps. This is the first time such an analysis has been undertaken on the NIHR portfolio, and it is not known how the UK compares with other countries. The NIHR team is working with the NCRI CSGs and other stakeholders to encourage increased development of relevant studies for the TYA population and recruitment is being prospectively monitored.