Frontotemporal Degeneration (FTD): Community Perspectives on Clinical Trials
Bibliographic record
Abstract
BACKGROUND: Frontotemporal degeneration (FTD) is a complex, heterogeneous group of fatal adult-onset disorders which lead to progressive dysfunction in behavior, motor symptoms, language, and/or cognition. While advances in research are cause for optimism, trials are hindered by the availability of participants. As FTD clinical trials typically require co-participation of a study partner, care partner perspectives on research are critical to understanding how to support recruitment and retention. METHOD: An anonymized online survey queried aspects of the lived experience of FTD from the perspectives of people diagnosed, care partners, and biological family members from the United States, Canada, and the UK. The survey was circulated by the Association for Frontotemporal Degeneration (AFTD), the FTD Disorders Registry (FTDDR), and partner non-profits, with 1800 complete responses, of which 1246 were from current or former care partners. RESULT: The percentage of care partners willing or very willing to participate in a clinical trial was highest amongst those caring for individuals at mild or moderate stages of disease (70% and 66%, respectively), though 49% of care partners were willing or very willing even at profound stages. Of those willing to participate, the diagnosed person's reported willingness to answer detailed questions differed between those at earlier stages and those who were more progressed while lumbar punctures were the study procedure reported as least likely for the person diagnosed to be willing to undergo, at any stage of disease. Factors that increase willingness to participate included trial decentralization. CONCLUSION: FTD care partners are integral stakeholders in successful clinical trials. Their perceptions of clinical trials and openness to facilitating enrollment of the person diagnosed are moderated by factors such as disease severity and trial burden. Researchers must ensure the perspectives of people impacted by FTD are accounted for in trial design.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.212 | 0.350 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.004 |
| Science and technology studies | 0.008 | 0.016 |
| Scholarly communication | 0.019 | 0.013 |
| Open science | 0.003 | 0.016 |
| Research integrity | 0.016 | 0.018 |
| Insufficient payload (model declined to judge) | 0.012 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".