Background and purpose

As part of the CTAP Diversity in Clinical Trials Project at the Cystic Fibrosis Trust we want to ensure that everyone with cystic fibrosis in the UK has equitable and fair access to research opportunities. The main aims of this survey are to identify the patient demographics of who is already taking part in CF research, who is underrepresented, and what makes people more, or less, likely to join studies. We hope that these insights can help inform the work of the Diversity in Clinical Trials Project.
Key survey themes

  • Understand who answers – gather simple background information (age, sex at birth, gender identity, ethnicity, language, disabilities, work and financial situation, and whether someone takes CFTR modulators).
  • Learn about past research experience - whether people have taken part in research, their ratings of communication, procedures, travel and reimbursement, and reasons for declining.
  • Find barriers and motivators - identify practical issues (time, travel, procedures), health concerns, trust and information needs, and what would motivate people (e.g., access to new treatments, help science, financial compensation).
  • Research interest and types - see which kinds of studies people would consider (drug trials, gene therapy, infection treatment, lifestyle, co-morbidities) and whether people would pause modulators for genetic therapy trials.
  • Improve awareness and access - find out how people learn about studies and how easy it is to get information so researchers and clinics can do better outreach and support.

T