ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration: a multisite research consortium. Information on this page is from ALLFTD.
Summary
ALLFTD is a comprehensive study targeting most varieties of frontotemporal lobar degeneration (FTLD).
Frontotemporal Lobar Degeneration (FTLD) is the neuropathological term for a related group of rare neurodegenerative disorders that cause a variety of impairments in social function and personality, cognitive ability, language, and motor function. Research on the different FTLD disorders traditionally has been performed either by behavioral neurologists who focus on behavior, cognition and language, or by movement disorder neurologists who focus on movement abnormalities. There is a growing agreement that research needs to incorporate both to successfully develop effective therapies. The ARTFL consortium brings together leading behavioral and movement disorder researchers in North America to focus on studies that enable research for FTLD.
The primary objectives of this study are:
To characterize FTLD patients (including familial FTLD and sporadic FTLD) followed at expert centers who can potentially be available for treatment trials.
To collecting comprehensive cognitive and behavioral assessment data, in addition to imaging, blood, and cerebrospinal fluid (CSF), with the following goals:
- 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.
- To develop a familial FTLD (f-FTLD) cohort for clinical trials and biomarker studies.
To share clinical data, images and biological samples from participants affected by FTLD with the scientific community to address additional scientific questions about FTLD.
Study Q&A: www.allftd.org/studyfaq
Eligibility
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Familial 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. Learn more about f-FTLD here.
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Sporadic 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. Learn more about these syndromes here.
How to Participate: In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation at the UW ADRC site in Seattle, WA.
UW ADRC Study Contact:
Coordinator:
Alicia Adams | adamsali@uw.edu |206-221-9038
Office#: 14JN1444
UW ADRC Site PI:
Kimiko Domoto-Reilly, MD