xIRB ALLFTD: ARTFL-LEFFTDS LONGITUDINAL FRONTOTEMPORAL LOBAR DEGENERATION
ALLFTD 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. This study is an international multi-site study and Northwestern University is one of 19 sites. The overall goal of ALLFTD is to prepare for treatment trials in FTLD by focusing on several major activities:
1. Characterizing FTLD patients (including familial FTLD [f-FTLD] and sporadic FTLD [s-FTLD]) followed at expert centers who can potentially be available for treatment trials
2. Collecting comprehensive cognitive and behavioral assessment data, in addition to imaging, blood, and cerebrospinal fluid (CSF), with the following goals:
o Identifying the best clinical measurements and biomarkers for following patients with FTLD in treatment trials
o Identifying 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.
3. Sharing clinical data, images and biological samples from participants affected by FTLD with the scientific community to address additional scientific questions about FTLD
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