Report from teenager and young adult focused ECMC Haematology Network Group meeting

Our regular ECMC Haematology Network Group meeting held a kickoff Teenager and Young Adult (TYA) session, and attendance figures in themselves were evidence of the demand for discussion in this area. Professor Oliver Ottman, Director of the Division of Cancer and Genetics and group chair took the opportunity to warmly announce the democratic appointment of Emma Searle as group deputy. Gillian Horne stepped in to steer the meeting, did so capably and added many important insights throughout. 

 

Caroline-May Huxley gave the first presentation on challenges within TYA trial set-up, which provided a strong overview of the group's aims going forward.

 

The DETERMINE study provided both a concrete example of a successful study incorporating TYA participants but also provided examples of obstacles to participation and trial lead Matt Krebs did a wonderful job of walking us through the DETERMINE's strengths and sticking points.  It was encouraging to see attendees offering ideas of improvements and solutions at this point, and optimising centre structures to incorporate haematology and solid cancers as well as involving TYA patients will be an ongoing topic for the group to share best practice around.

 

Research nurse Karen Hamlen then added to the theme from a nursing perspective, adding the important consideration of age-appropriate information. Karen and colleagues have identified the issue and are well on their way to producing the materials that are sorely needed. A conversation on research nurse funding followed, with many contributing avenues of funding that could really make a difference in this area.

 

Rhian Thomas-Turner of Noah's Ark Hospital Cardiff and Anne Thomson of Vivo Biobank then gave overviews of the EFGCP Adolescent Inclusion Decision Tree and Biobanking and consent respectively - both offering practical tools that could widen TYA participation in trials.

 

Professor of Epidemiology Anthony Moorman then discussed genomic/clinical data integration, how recruitment is affected by devolution and the various definitions of adolescence internationally. There followed a succinct ECMC office update by Lamise Nasr, which detailed upcoming opportunities.

 

We have had a positive response to this meeting, whose success in no small part was down to the diligent planning of the Haematology Network TYA Subgroup, and ECMC will look at scheduling further TYA-focused meetings once participant contributions have been gathered that we can build upon. The regular Haematology Network Group meetings will continue serving their important function alongside.

 

To find out more about the ECMC Haematology Network Group, contact: CardiffECMC@cardiff.ac.uk