RECRUITING

CureDRPLA Global Patient Registry

Conditions

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

The objective of the CureDRPLA Global Patient Registry is to establish a longitudinal database of patient-reported data on individuals affected with Dentatorubral-pallidoluysian atrophy (DRPLA) from anywhere in the world. The CureDRPLA Global Patient Registry will address patient needs by: * Expanding patient engagement by documenting quality of life outcomes. * Providing anonymized data to the DRPLA research community on patient experience with the disease and priorities for treatment. * Connecting DRPLA patients with opportunities to participate in clinical research.

Official Title

CureDRPLA Global Patient Registry for Individuals With Dentatorubral-pallidoluysian Atrophy (DRPLA)

Quick Facts

Study Start:2021-03-01
Study Completion:2031-11-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT05489393

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:0 Years to 100 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Individuals of all ages with a self-reported diagnosis of DRPLA.
  2. * Understand and sign the informed consent form (IFC). Participants who lack the capacity to consent (e.g. cognitively impaired individuals) will require consent from the legal authorized representative, and the assent of the subject will be obtained to the extent compatible with their capacity. Participants at age 12 to age of consent will require assent along with the consent of their parent or legal guardian.
  1. * Ataxia conditions other than DRPLA.
  2. * Failure to sign the IFC (and assent form, as needed).

Contacts and Locations

Study Locations (Sites)

CureDRPLA
New York, New York, 11231
United States

Collaborators and Investigators

Sponsor: CureDRPLA

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 Date2021-03-01
Study Completion Date2031-11-01

Study Record Updates

Study Start Date2021-03-01
Study Completion Date2031-11-01

Terms related to this study

Additional Relevant MeSH Terms

  • DRPLA