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Genetic testing in people with progressive supranuclear palsy and corticobasal syndrome

Studies genes in blood samples from adults with PSP, CBS and related conditions.

Key facts

Who runs it
Massachusetts General Hospital
Where
Boston, United StatesSee the site
Trial code
Registry title
The CurePSP Genetics Program
Status
Recruiting
People taking part
1,000 people, planned
Started
8 Oct 2024
Expected to end
31 Dec 2030
Type of study
Observational
Treatments tested
  • Whole genome sequencing will be performed at the NIH
Record updated
14 January 2026

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for adults with PSP, CBS, MSA or a related brain disease, and for unaffected family members. It collects blood for DNA research.

Age
35 years or older.
Sex
All sexes can join.
Disease stage
A doctor's diagnosis of PSP, CBS, MSA or a related neurological disease. Possible or probable PSP (MDS criteria), clinically established or clinically probable MSA, or possible or probable CBS (Armstrong criteria 2013). Unaffected family members with a family history of these conditions can also join.
Earlier treatment
People who had a blood transfusion in the past 3 months or a bone marrow transplant in the past 5 years cannot join.

Main reasons for not taking part

  • Blood transfusion within the past 3 months.
  • Active blood cancer, such as lymphoma or leukemia.
  • Bone marrow transplant within the past 5 years.
  • Under age 35, or under the age of majority in the person's state, at consent.

The registry criteria, word for word

Show all 9 criteriaShow less

Who can take part

  • 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)

Who cannot take part

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

Where in United States

  • Massachusetts General HospitalBoston, United StatesContact: Chinyere Obasi, BATaking people

About the trial

What the trial wants to find out

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.

Read full original descriptionShow less

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.

The group in the trial

  • CurePSP Genetics Program

    Adults with PSP, CBD or MSA

    Treatment: Whole genome sequencing will be performed at the NIH

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
The CurePSP Genetics Program
Plain-language title
Genetic testing in people with progressive supranuclear palsy and corticobasal syndromeGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 14 November 2026.
Record updated
14 January 2026