BSN PSP/CBD Conference – Dianna Wheaton

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