NCT04639622Recruiting
GENetic Fronto Temporal Dementia Initiative in Lille
Source: ClinicalTrials.gov · Last updated 22 May 2026
Brief summary (registry, in English)
GENFI Lille is a French cohort that belongs to the international initiative GENFI2, a five year longitudinal biomarker cohort study of genetic FTD and its associated disorders (including MND/ALS) investigating members of families with a known mutation in GRN or MAPT or an expansion in C9orf72 (including those affected with the disorder as well as at-risk members of families).
- Status (registry)
- Recruiting
- Study type
- Interventional
- Enrollment
- 20 (estimated)
- First submitted
- 26 Apr 2019
- Start date
- Apr 2019
- Primary completion date
- Apr 2027
- Lead sponsor
- University Hospital, Lille
- Diseases
- Frontotemporal dementia
- NCT number
- NCT04639622
What you commit to
- Study type: Interventional
- Planned participants: 20
- From Apr 2019 to the primary completion date, Apr 2027
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Who the study is looking for
- The participant must be a member of a family with a known pathogenic mutation in the GRN or MAPT genes, or with a pathogenic expansion in the C9orf72 gene : * An affected member is one who has been clinically diagnosed by a neurologist as having frontotemporal dementia or a disorder in the FTD spectrum. * An at-risk member is one who is a first-degree relative of a family member affected with the disease. * Pathogenicity of a GRN or MAPT mutation is defined by those included within the GENFI list of FTD mutation. If a novel mutation is discovered that is likely to be pathogenic and has not yet been included within the FTD mutation database then the GENFI Genetics Core will decide on inclusion. Please send an email to the GENFI Trials Team at. * A pathogenic C9orf72 expansion is defined as greater than 30 repeats. Intermediate expansions are not considered pathogenic. * Participants from one of the small number of families around the world in which 2 (or more) pathogenic mutations have been found should not be included in GENFI.
- If the participant is demented or cognitively impaired there must be an available caregiver that can escort them.
- The participant must have an identified informant.
- The participant must be fluent in the language of their country of assessment.
- The participant accepts that genetic analysis will be carried out on his/her blood samples, and that no results will be available neither for the investigator nor for the participant. Exclusion Criteria: * Participant has another medical or psychiatric illness that would interfere in completing assessments.
- Contraindications to FDG-PET (allergy to FDG…)
- Participant is pregnant.
Age in the registry: 18 years to - · Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Hôpital Roger Salengro, CHRU de Lille - CMRR Coordinator of this site? Confirm its status | Lille | France | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.