info@predictaya.eu

Call for Interest: Patient and Relatives Advisory Board Members

Help us shape the future of care for young cancer survivors!

Surviving cancer as a teenager or young adult is a major victory, but we know that many long-term challenges remain. PredictAYA is a research project dedicated to understanding the impact of these late effects from cancer treatment and finding ways to prevent them.

Using data from health registries, genetic biobanks, and new patient groups, PredictAYA aims to identify biomarkers that show who is at higher risk for organ damage. This will help doctors offer personalized screening and advice, improving care for survivors. Furthermore, surveys will explore patients’ care preferences and needs, including fertility, sexuality, mental health, and quality of life.

PredictAYA is a team effort, bringing together clinicians, researchers, psychologists, nurses, but patients are at the heart of this project. Your input will shape study design, materials, and outcomes. By working in partnership, the project hopes to create a future where young cancer survivors have the best chances at a healthy, fulfilling future.

Who are we looking for?

Patient representatives – whether experienced as such or completely “new to the job”

  • Age at cancer diagnosis was between 15 and 39 years
  • Being a relative (e.g. partner, parent)
  • Independent of desire for children, being a parent or whether your treatment affected fertility or not
  • Interest in shaping research together

A diversity in backgrounds, experiences, educational status, cancer treatment and professions is encouraged. If you have received treatments likely to affect fertility (e.g., radiation therapy), and if you are a young man, you are especially encouraged to participate.

To register your interest in participating, please send us an e-mail (see below) with your name, country of origin and what task/tasks you are interested in.

What would your participation mean?

If you would like to participate, it would mean 2-4 online meetings per year together with the other PRAB members (~10) and researchers from different parts of the project. Meetings may be audio-recorded. You will receive reimbursement for your participation. You can choose your participation according to preference and interest.

Tasks may include:

  • Consultation on data and study design
  • Audit/review of patient involvement in different parts of the study
  • Consultation on outcome measures and surveys, questionnaires, patient information
  • Consultation on communication on the use of AI in e.g. prediction modelling
  • Dissemination of results/translation of results into lay-language/ making data accessible to patients
  • Guideline development, PLAIN language versions, dissemination
  • Inclusion in discussions on ethics and data (i.e. data solidarity)
  • Including patients in deliverable review processes
  • Co-authorship

Who can you contact if you want to apply and/or have further questions?

Contact person is Anna Jervaeus (anna.jervaeus@ki.se).

If you want to learn more about the specific activities in the project, read Work Package (WP) summaries below.

PRAB Invitation Letter

Were you diagnosed with cancer at a young age (15-39 years at diagnosis) or are you a relative (e.g., parent, partner) of someone diagnosed with cancer? Join our PredictAYA Patient and Relatives Advisory Board (PRAB)!

PredictAYA Work Packages Summaries

Find out more about our specific activities in the project and how you can get involved as a member of the Patient and Relatives Advisory Board (PRAB).