What is this study about?
The team at Newcastle University and the LifeArc Centre for Acceleration of Rare Disease Trials (ARDT) want to hear about your understanding, views and experiences of clinical trials, whether or not you have taken part in one, and what could be improved to make clinical trials more accessible and better meet the needs of patients and families. We want to hear from you even if you have never been offered a trial.
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 provide 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 take part, wanted to take part but could not, or have never been offered one
What’s involved?
- One interview lasting around 45–60 minutes. There are no right or wrong answers
- If you would like to, you can share up to three photographs that represent your experiences (optional)
- Taking part is voluntary, but as a thank you, you will receive a £25 shopping voucher
How will your views help?
By sharing your experiences, you will help us learn what works well, what could be better, and how clinical trials could become fairer, more inclusive and better meet the needs of patients and families. We will share our findings with patients, families, professionals, researchers and charities.
To take part, or to find out more, contact Dr Basma Salem
Call or text: 07584 00364
Email: [email protected]
