RECRUITING

The CurePSP Genetics Program

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

The CurePSP Genetics Program

Quick Facts

Study Start:2024-10-08
Study Completion:2030-12-31
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06647641

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:35 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. 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.
  2. 2. 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.
  3. 3. Willingness to undergo genetic testing. Participants will have the option to receive relevant genetic test results.
  4. 4. 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.
  5. 5. Are able to perform or have a designee who can perform study activities (including completion of either online or orally administered surveys).
  1. 1. Individuals who have received a blood transfusion within the past 3 months.
  2. 2. Individuals who have active hematologic malignancies such as lymphoma or leukemia.
  3. 3. Individuals who have had a bone marrow transplant within the past 5 years.
  4. 4. Individuals under the age of 35 or age of majority in applicable states at the time of consenting.

Contacts and Locations

Study Contact

MGH Research Coordinators
CONTACT
617-643-2400
mghpsp@partners.org
CurePSP Hope Line
CONTACT
800-457-4777
info@curepsp.org

Study Locations (Sites)

Massachusetts General Hospital
Boston, Massachusetts, 02114
United States

Collaborators and Investigators

Sponsor: Massachusetts General Hospital

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2024-10-08
Study Completion Date2030-12-31

Study Record Updates

Study Start Date2024-10-08
Study Completion Date2030-12-31

Terms related to this study

Keywords Provided by Researchers

  • genetic study
  • Progressive Supranuclear Palsy
  • Multiple System Atrophy
  • Corticobasal
  • CurePSP
  • PSP
  • MSA
  • CBD
  • Genes

Additional Relevant MeSH Terms

  • 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)