BackgroundWhile efforts are underway to better understand the prevalence, incidence, pathophysiology, and phenomenology of FTD, most research participation has been dominated by persons of European descent. Better understanding of early signs, the diagnostic journey, and the functional impacts in historically underrepresented groups may help shed light on healthcare inequities, support the development of more inclusive research study design, and lay the foundation for more targeted care and interventions.MethodIn preparation for an Externally Led Patient‐Focused Drug Development (PFDD) meeting, the Association for Frontotemporal Degeneration (AFTD) and the FTD Disorders Registry (FTDDR) collaborated to develop the FTD Insights Survey. The online survey queried aspects of the lived experience of FTD from the patient/family/carer perspective.ResultOf the 1,796 respondents that completed the survey, twenty‐five represented the experience of African American persons diagnosed with FTD from the perspective of those diagnosed (n = 4) and care partners (n = 21). Two additional respondents reported on their experience as African American biological family members of those with FTD. Thirty‐six percent of African Americans needed to see 4 or more doctors before receiving an FTD diagnosis, compared to 18% of total respondents, and were more likely to initially receive a different diagnosis (80% vs. 45%). While patterns of the first symptoms were reported similarly across all participants, African Americans were more likely to report having initially experienced changes in thinking, spatial reasoning, or delusions/hallucinations. African Americans were also more likely to report distress related to language, sleep, and delusions/hallucinations and less likely to report no distress or distress related to cognitive symptoms. African American participants were more likely to endorse wanting a treatment to maintain independence and hold a job than overall participants.ConclusionThe African American perspectives reported on the FTD Insights Survey represent a small sample size of individuals with greater than average levels of education (76% had an Associate’s degree or higher). The experience they report overlaps with those of other respondents, but with key differences including more difficulty in access to timely diagnosis. More information is needed on the lived experience of FTD across people of different cultural, social, economic backgrounds.

Background FTD is a group of rare brain diseases that cause myriad progressive changes to behavior, personality, language, and movement with onset typically before age 60. There are currently no treatments or cure. The FTDDR is a regulatory‐compliant, web‐based portal that functions as both a Contact Registry and Research Registry for persons affected by FTD to amplify the patient/family voice and facilitate research. The Disease Impact Survey was designed to characterize person‐centric perceptions of FTD disease manifestation and the impact to those diagnosed and others. Method The 35‐question survey was administered online via the Research Registry to 672 participants (205 male; 467 female) between March 2017 and January 2021. Multiple‐choice style questions collected details about the diagnosis, symptoms, and daily life functionality. It also queried how the lives of people around diagnosed persons are affected. Result Respondents were 19.5% FTD‐diagnosed persons, 40% biological family, 40% spouse/partner caregivers. Diagnosis was 54% bvFTD, 6% nfvPPA, 7% svPPA, 4% lvPPA, 9% PSP, 7% CBD/CBS, 4% FTD‐ALS, 2% other, and 6% indeterminate. The most common first symptom was personality change (27%), cognitive problem (25%), or language problem (18%). 78% of individuals waited for a second symptom before seeking a diagnosis. 52% required seeing 3 or more doctors before an FTD diagnosis was determined. 75% of FTD diagnosed persons were reported to be living at home. Assistance required with daily activities ranged from 30% for self‐reporting FTD persons versus 43% as reported by biological family/spouse/caregivers. Family and caregivers reported a range of negative impacts including altered role/relationships (84%), disrupted plans for the future (73%), and increased stress/negative health (73%). Conclusion FTD is a devastating disease that hinders a person in the prime of life from performing basic mental and/or physical daily tasks, and in most cases changes the person’s personality and behaviors. The Disease Impact Survey captures these elements from the lived experience and demonstrates that FTD not only affects the person diagnosed, but also family, friends, and caregivers.

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, and movement. No treatments or cures are currently available, underscoring the need for research participation. Method: 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 and January 2022 using a multiple-choice and True/False-style format.Result: Respondents (n = 750) were 80% caregivers/biological family members and 20% FTD diagnosed persons responding independently or with care partner/helper assistance (31% male, 69% female; age range = 50-74 years). FTD diagnoses represented among the respondents were behavioral variant FTD (bvFTD 55%), primary progressive aphasia (PPA 17%) progressive supranuclear palsy (PSP 9%), corticobasal degeneration/syndrome (CBD/CBS 7%), FTD with motor neuron disease (FTD-ALS 4%), and other/diagnosis pending (8%). Research studies were viewed positively by the majority of respondents (85%) and this was similarly reflected by a high willingness to participate (84%) in a research study/clinical trial, especially if it was about treating or preventing disease. 64% of respondents ranked their understanding of clinical trial concepts as knowledgeable-to-very knowledgeable which was subsequently supported by 87% correctly answering 8 of 10 questions about principals of research.Barriers to participation in research included fear that the study would be too difficult physically/emotionally (28%), concern about time off from work (25%) and lack of reimbursement for travel expenses (20%). Most respondents (68%) reported that additional information and education about research studies/clinical trials would increase their ability to evaluate participation. Conclusion:Survey results indicated that while FTDDR members have a positive perception of research and are relatively knowledgeable about principals of participation, there is a strong desire for additional information and education to empower informed decision-making. Understanding and addressing perceived barriers as well as creating

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