Study Details
Join the ALLFTD Study Waitlist ALLFTD (ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration) Study is a comprehensive study targeting most varieties of frontotemporal lobar degeneration (FTLD). FTLD is a neurological disease that causes Frontotemporal Dementia (FTD) syndromes including Primary Progressive Aphasia (PPA) and Behavioral Variant Frontotemporal Dementia (bvFTD), among others.
Participating in the longitudinal arm of ALLFTD involves annual visits to an ALLFTD clinical site. Annual visits usually span 2-3 days, and involve a neurological exam; tests of memory, behavior, and judgement; a blood draw, imaging of your brain (MRI), and an optional lumbar puncture (LP). All participants enrolled in ALLFTD will have their DNA (from the blood draw) tested for FTLD-associated genetic mutations, but you do not have to learn this information. Participation may last up to 5 years.
The goals of the study are: To identify the best clinical measurements and biomarkers for following patients with FTLD in treatment trials. To identify clinical measurements and biomarkers that indicate when a person with a high risk of developing FTLD due to a mutation will begin to have symptoms. Sharing clinical data, images and biological samples from participants affected by FTLD with the scientific community to address additional scientific questions about FTLD. https://www.allftd.org/ Due to the amazing contributions of our research participants, we have met our site's enrollment goals. If you are interested, we can add you to the ALLFTD waitlist and as sites have availability, we will offer openings to those on our waitlist. If you would like to be placed on our waitlist, please complete this inquiry survey. We strongly encourage you to review additional research opportunities here and we encourage you to join the FTD Disorder Registry ALLFTD includes symptomatic and “at-risk” participants. FTLD may be sporadic, with no known cause. It may also be familial, due to genetic mutations. We are still learning about mutations that cause FTLD, so a strong family history of FTLD is sufficient to enroll as:
Familial FTLD (f-FTLD). You are eligible to enroll in the familial FTLD cohort if 1) you have a mutation in one of the three most common genes associated with FTD –microtubule associated protein tau (MAPT), progranulin (GRN), or chromosome 9 open reading frame 72 (C9orf72), regardless of whether you have symptoms or not, 2) you have a blood relative with a mutation in one of those genes, or 3) you have a strong family history of FTLD but no genetic mutation has been identified.
Sporadic FTLD (s-FTLD). You are eligible to enroll in the sporadic cohort of the study if you have one of the following FTLD spectrum diagnoses: frontotemporal dementia, primary progressive aphasia, progressive supranuclear palsy, corticobasal degeneration syndrome, or frontotemporal dementia with amyotrophic lateral sclerosis. |