The Penn FTD Center is a proud participant in two multi-center FTD clinical research studies funded by the National Institutes of Health. 

The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) study is focused on families that have one of the three most common genes associated with FTD– microtubule associated protein tau (MAPT), progranulin (PGRN; also known as granulin or GRN), or chromosome 9 open reading frame 72 (C9ORF72). This study is being done to learn more about the natural history of these disorders in preparation for treatment trials by studying families in which one or more relatives have a mutation in one of these genes associated with FTD. Individuals with a clinical diagnosis of FTD as well as family members without symptoms are welcome to participate. Participants do not have to know their genetic status, and they do not need to have their genetic status disclosed to them in order to participate.  Participants must be 18 years of age or older and have a study partner (family member or friend who knows them well) who has frequent contact with the participant.

Participation in LEFFTDS will include a 1 day (8 hour) visit per year for 3 years.

The Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) study is focused on individuals that have a clinical diagnosis of FTD, including both genetic and non-genetic (also known as “sporadic”) FTD to help determine the clinical, genetic and biomarker profiles of FTD syndromes to improve diagnosis of these disorders in preparation for treatment trials. Participants must be 18 years of age or older and have a study partner who has frequent contact with the participant.

Participation in ARTFL will include a 1 day (8 hour) visit. Participants with a family history of FTD may be invited to participate in a 1 year follow-up visit.

Participation in both LEFFTDS and ARTFL may include:

  • Physical and cognitive examination by a neurologist
  • Blood sample
  • Magnetic resonance imaging (MRI) studies of the brain
  • Lumbar puncture for studies on cerebrospinal fluid
  • Cognitive testing
  • Completion of questionnaires by participant and study partner

For more information on participating: contact Rachael Langey at the Penn FTD Center by telephone at 215-662-6151 or by email at langeyr@mail.med.upenn.edu

More information on these national studies is available on ClinicalTrials.gov.

LEFFTDS: https://clinicaltrials.gov/ct2/show/NCT02372773?term=LEFFTDS&rank=1

ARTFL: https://clinicaltrials.gov/ct2/show/NCT02365922?term=ARTFL&rank=1

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