Research for Frontotemporal Dementia

Recruiting at 29 trial locations

Overseen By Hilary Heuer, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Mayo Clinic

Must not be taking: CNS affecting drugs

Disqualifiers: Alzheimer's, Korsakoff, HIV, renal failure, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

2100 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to study Frontotemporal Lobar Degeneration (FTLD), a brain condition affecting behavior, language, and movement. The research will examine individuals with and without a family history of FTLD. Participants may qualify if they or a family member has a genetic mutation linked to FTLD or if they have been diagnosed with specific types of FTLD, such as Progressive Supranuclear Palsy or Behavioral variant Frontotemporal Dementia. The trial seeks to enhance understanding of this condition to improve future treatments. As an unphased trial, this study offers a unique opportunity to contribute to foundational research that could lead to breakthroughs in understanding and treating FTLD.

Why are researchers excited about this trial?

Researchers are excited about the ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) trial because it aims to uncover crucial insights into the progression of frontotemporal lobar degeneration (FTLD), a condition with limited treatment options. Unlike standard treatments that primarily focus on managing symptoms, this trial seeks to understand the disease's underlying mechanisms over time. By longitudinally studying patients, researchers hope to identify early markers and potential targets for future therapies, paving the way for more effective and personalized treatments in the future.

Who Is on the Research Team?

Howie Rosen, MD

Principal Investigator

University of California, San Francisco

Bradley Boeve, MD

Principal Investigator

Mayo Clinic

Adam Boxer, MD, PhD

Principal Investigator

University of California, San Francisco

Are You a Good Fit for This Trial?

Inclusion Criteria

Longitudinal Arm Inclusion Criteria

members of families in whom at least one member has a known disease-associated mutation in one of the major genes that cause f-FTLD: MAPT, GRN, C9orf72 (or other rare genes)

an autosomal dominant family history of a FTLD syndrome (without a known gene) verified by medical record review or well-documented family history including family members with a medical history consistent with FTLD or a related disorder.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Longitudinal Assessment

Comprehensive assessment of clinical, functional, imaging, and biofluid data collection annually

5 years

Annual visits

Biofluid-focused Assessment

Limited clinical data collection to accompany biospecimen collection

5 years

Annual visits

Follow-up

Participants are monitored for safety and effectiveness after treatment

1 year

What Are the Treatments Tested in This Trial?

Who Is Running the Clinical Trial?

Mayo Clinic

Lead Sponsor

Trials

3,427

Recruited

3,221,000+

National Institute of Neurological Disorders and Stroke (NINDS)

Collaborator

Trials

1,403

Recruited

655,000+

University of California, San Francisco

Collaborator

Trials

2,636

Recruited

19,080,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+