FTD Disorders Registry: A Patient & Caregiver Registry
Dianna Wheaton, MS, PhD, CHES, FTD Registry
- FTD Disorders Registry – A patient and caregiver registry to advance science
- Secure online database designed to be the home of all individuals wishing to participate in FTD research
- Community where you can share your experience of FTD to help us understand these diseases better and support the development of new treatments
- Fully independent entity with the patient/caregiver registry as a sole non profit mission
- Funded by grants
- Contact & Research registry (Restricted to US & Canada)
- Have access to information updates and emails
- Focused to help do outcome research and support clinical trial and research study recruitment
- Data collection tool uses surveys and questionnaires that are administered online, 3 intake surveys (demographics, disease impact, and research readiness)
- Client partner surveys are also administered (ARTFL clinical network)
- Why join?
- Your experience can improve our knowledge of FTD, impact care, and help others
- Participating in research surveys will provide data to advance the science
- The registry will be the go-to site to recruit for FTD clinical trials
- Who can join?
- Persons impacted by any FTD disorders
- Half enrollees are spouse/caregiver/friends
- What can we do with the data?
- Tabulate who, where, and how many
- Build a clearer picture of the impact of FTD from a patient, caregiver, and family perspective
- Assess research study/clinical trial feasibility
- Use the data to raise awareness, and advance research and facilitate more meaningful connections