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The CurePSP Genetics Program

Massachusetts General Hospital · with CurePSP Foundation, National Institutes of Health (NIH) · NCT06647641

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Ages 35+ · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
1000
US sites recruiting
1
Study start
October 8, 2024
Record last updated
January 14, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

This study is an observational, prospective genetic study. It aims to obtain DNA for research and testing from patients with PSP, CBS, MSA, and related neurological conditions and their families.

Up to 1,000 adults who have been clinically diagnosed with PSP, CBS, MSA, or related neurological conditions will be enrolled. The study intervention involves sequencing of participant blood samples using non-CLIA-approved whole genome sequencing at the National Institutes of Health. Pathogenic variants that are deemed possibly related to these conditions will be confirmed using CLIA-approved testing. The study involves minimal risk to participants.

Being studied: Whole genome sequencing will be performed at the NIH

Conditions: PSP; PSP - Progressive Supranuclear Palsy; Corticobasal Syndrome; Corticobasal Syndrome(CBS); Corticobasal Degeneration Syndrome; Corticobasal Degeneration; Corticobasal Degeneration (CBD); Corticobasal Syndrome (CBS); MSA; MSA - Multiple System Atrophy; MSA-C; Multiple System Atrophy; Multiple System Atrophy (MSA) With Orthostatic Hypotension; Multiple System Atrophy - Cerebellar Subtype (MSA-C); Multiple System Atrophy - Parkinsonian Subtype (MSA-P); Multiple System Atrophy, Cerebellar Type; Multiple System Atrophy, Parkinsonian Type; Progressive Supranuclear Palsy; Progressive Supranuclear Palsy(PSP); Progressive Supranuclear Palsy (PSP)

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

  • Adults (aged 35 or older) with a clinical diagnosis of PSP, CBS, MSA, or a related neurological disease as confirmed by their healthcare provider, or unaffected family members of participants who have reported a family history of relevant neurodegenerative conditions.
  • Meet Movement Disorder Society (MDS) Clinical Diagnostic Criteria for Possible or Probable PSP (32), clinically established or clinically probable MSA (33), Armstrong criteria (2013) for possible or probable CBS (34). Diagnostic certainty will be determined by the treating/referring clinician.
  • Willingness to undergo genetic testing. Participants will have the option to receive relevant genetic test results.
  • Have the capacity to give full informed consent in writing or electronically, or provide consent through a legally authorized representative (LAR)/power of attorney (POA), and have read, understood, and completed the informed consent form.
  • Are able to perform or have a designee who can perform study activities (including completion of either online or orally administered surveys).

Exclusion Criteria

  • Individuals who have received a blood transfusion within the past 3 months.
  • Individuals who have active hematologic malignancies such as lymphoma or leukemia.
  • Individuals who have had a bone marrow transplant within the past 5 years.
  • Individuals under the age of 35 or age of majority in applicable states at the time of consenting.

Recruiting US locations

  • Massachusetts General Hospital

    Boston, MA 02114

    Site contact: Chinyere Obasi, BA · 617-643-2400 · mghpsp@partners.org

Study contacts (from the official record)

  • MGH Research Coordinators · 617-643-2400 · mghpsp@partners.org
  • CurePSP Hope Line · 800-457-4777 · info@curepsp.org
All neurology studies in Massachusetts →
The CurePSP Genetics Program (NCT06647641) | Bored Studies