This is a biomarker study designed to collect and analyze blood specimens from individuals carrying known familial frontotemporal lobar degeneration (f-FTLD) mutations compared to a control group of individuals without known f-FTLD mutations. The NSP is an ancillary study to the ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration" (ALLFTD) study, NCT04363684. More information can be found at https://www.allftd.org/.
Who can participate
Age range
18 Years – 85 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion criteria
. Male or female
. Ages 18-85
. Provision of signed and dated informed consent form
. Stated willingness to comply with all study procedures and availability for the duration of the study
. Is enrolled in the longitudinal arm of ALLFTD
. Is a member of a family with a known mutation in C9orf72, GRN or MAPT
Exclusion criteria
. Any permanent contra-indication to repeated blood draws, such as poor venous access.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This trial is measuring neurofilament light chain levels in people with frontotemporal dementia — can you explain what that biomarker actually tells us about my condition, and whether tracking it over time would be useful for my care?
2Since this study is listed as 'active, not recruiting,' does that mean there's no way to join it now, and are there similar biomarker-tracking studies for FTD or FTLD that I might still be able to participate in?
3This trial focuses specifically on genetic forms of FTD like FTD-GRN — does my diagnosis or genetic profile match the kind of patients this study was designed for, and does that affect whether its findings would be relevant to me?
4Because this is listed as Phase NA, which often applies to observational or non-interventional studies, does participating in something like this involve any treatment, or is it purely about monitoring and data collection — and how might that fit into my current care plan?
5Are there treatment trials for frontotemporal dementia that use neurofilament light chain as an outcome measure, where the monitoring approach studied here might actually connect to a therapy I could discuss pursuing?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Neurofilament Light Chain Levels
Timeframe: 36 months
Trial details
NCT IDNCT04516499
SponsorThe Bluefield Project to Cure Frontotemporal Dementia