FROM CLAUDIA FUCHS, PhD, EURODIS - RARE DISEASES - MEMBER OF IRDiRC

I am taking this opportunity also to share a newly launched patient-centred survey developed within the IHI-funded RealiseD project, which aims to better understand the needs, preferences and expectations of people living with rare and ultra-rare diseases and their caregivers regarding clinical trial participation.

The findings will help inform the development of more patient-centred clinical trial approaches that better reflect the needs and priorities of the rare disease community.

We would be very grateful if you could help us disseminate the survey through your organisations and networks, reaching as many patients and caregivers as possible.

Survey link: https://survey.erknet.org/#/s/kjcpbfqqtr

A few key details:

• No previous clinical trial experience is required.

• Open to patients, family members and caregivers aged 14 and above.

• Anonymous, approximately 15 minutes to complete.

• Available in 17 languages.

• Open until January 2027.

We are also planning a webinar to share the findings with the community once the analysis is completed.

Many thanks in advance for your support in spreading the word and helping us make rare disease clinical trials more patient-centred!

Talking to you later.

Best wishes,
Claudia