Help shape rare disease research: one interview.

Basma_Salem
Basma_Salem Community Member Posts: 1 Listener
in Actions and opportunities

We want to hear your story

Our team at Newcastle University and the LifeArc Centre for Acceleration of Rare Disease Trials (ARDT) wants to hear about your views and experiences of clinical trials, even if you have never been offered one.

Who can take part?

  • Adults aged 18 or over, living in the UK
  • People living with a rare disease, or a parent or carer for someone with a rare disease
  • You (or the person you care for) must have a clinical or genetic diagnosis of a rare disease
  • You can take part whether you have taken part in a trial, decided not to, wanted to but could not, or have never been offered one

What is involved?

  • One interview, around 45–60 minutes (online or by phone)
  • Optional: share up to three photographs that represent your experiences
  • £25 shopping voucher as a thank you for your time

How will your views help?

  • Help make clinical trials fairer, more inclusive and better at meeting the needs of patients and families
  • Your voice can shape how clinical trials are explained to rare disease families

Interested? Contact Dr Basma Salem

Comments

  • Rosie_Scope
    Rosie_Scope Posts: 9,900 Scope online community team

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