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. 2024 May 17;31(5):2874-2880.
doi: 10.3390/curroncol31050219.

Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership

Perri R Tutelman  1   2 , Chantale Thurston  3 , Tamara Rader  4 , Brianna Henry  1 , Tristyn Ranger  1 , Mohamed Abdelaal  5 , Michelle Blue  6 , Timothy W Buckland  3 , Stefanie Del Gobbo  7 , Lexy Dobson  3 , Emily Gallant  3 , Cheryl Heykoop  3 , Mackenzie Jansen  8 , Lorna Larsen  3 , Nicole Maseja  3 , Sapna Oberoi  8 , Vinesha Ramasamy  3 , Marlie Smith  9 , Evan Taylor  10 , Nadia Wendowsky  3 , Sara Beattie  1   2 , Jacqueline Bender  9   11 , Kathryn A Birnie  12 , Sheila N Garland  13 , Lindsay Jibb  11 , Melanie Noel  14 , Fiona S M Schulte  1
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Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership

Perri R Tutelman et al. Curr Oncol. .

Abstract

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

Keywords: AYA; James Lind Alliance; adolescent and young adult; cancer; patient involvement; priority-setting partnership; research priorities.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

Figure 1
Figure 1
Summary of the James Lind Alliance Priority-Setting Partnership process.
Figure 2
Figure 2
The AYA Cancer Priority-Setting Partnership project logo.
See this image and copyright information in PMC

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