Objective:

To understand awareness and attitudes towards participation in FTD research.

Background:

FTDDR is a web-based, contact and research registry to amplify the patient/family voice and facilitate research for frontotemporal degeneration (FTD), a rare group of early-onset dementia disorders. FTD not only alters cognition but also impacts behavior, personality, language, movement. No treatments or cures are currently available, underscoring the need for research participation.

Design/Methods:

The Research Readiness Survey was designed to assess knowledge of basic research principals and index perceptions of the value of research studies and clinical trials among the lay community. The 23-question survey was administered online to FTDDR participants between March 2017-October 2022.

Results:

A sub-cohort of respondents (n=735 of 853) represented FTD diagnoses of behavioral variant FTD (bvFTD 62.4%), primary progressive aphasia (PPA 19.5%), progressive supranuclear palsy or corticobasal degeneration/syndrome (PSP/CBD 18.1%). 78% were caregivers/biological family members, and 22% FTD diagnosed persons responding independently or with assistance (32% male, 68% female; age range= 50-74 years). Research was viewed positively by the majority of respondents (84.3%) and reflected by a high willingness to participate (87.3%) in a research study/clinical trial, especially if it was about treating or preventing disease. 63.6% ranked their understanding of clinical trial concepts as knowledgeable-to-very knowledgeable which was supported by 85% correctly answering 8 of 10 questions about research principals. Barriers to participation in research included fear that the study would be too difficult physically/emotionally (25.8%), lack of reimbursement for travel expenses (22.7%), and concern about time off from work (21.1%).

Conclusions:

Survey results indicated that while FTDDR members have a positive perception of research and are relatively knowledgeable about principals of participation, a strong desire exists for additional information and education to empower informed decision-making. Understanding and addressing perceived barriers along with creating person-centric studies with emphasis on participant-facing educational materials may increase research study participation.