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CureDRPLA Global Patient Registry for Dentatorubral-pallidoluysian atrophy (DRPLA)

This is an observational study, called the CureDRPLA Global Patient Registry, for people with Dentatorubral-pallidoluysian atrophy (DRPLA). The goal is to gather information from patients and caregivers around the world about their experiences with DRPLA. You would fill out questionnaires about your health, daily life, and how the disease affects you. This information helps researchers understand DRPLA better and find out what's most important to patients. It also helps connect patients with future research opportunities. The study aims to enroll 100 participants. To join, you need to have a self-reported diagnosis of DRPLA and be able to understand and sign a consent form. If you can't consent, a legal representative can do so for you. The study measures success by collecting these patient-reported questionnaires over one year.

Study design
This is an observational study, meaning it collects information without testing a specific treatment. It aims to enroll 100 participants of all ages with DRPLA.
What's involved
You will complete a series of questionnaires about your demographics, diagnosis, medical history, and quality of life. You'll receive yearly email reminders to update your information.
Compensation
Not stated in the trial record.
Follow-up
Participants will be asked to complete questionnaires at 1 year, and yearly email reminders will be sent to update data.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05489393

CureDRPLA Global Patient Registry

Recruiting
Not specifiedAges 0+Observational
CureDRPLA
~100 participants
Updated 2026-03-17 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Patient- or caregiver-filled questionnaires
Measured over 1 year

Conditions

DRPLA

Explore related trials

Dentatorubral-Pallidoluysian Atrophy

NCT05489393

Where you'd take part

This study runs at 1 site. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • CureDRPLA

    New York, New Yorkstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Who to contact

Silvia Prades, PhD
[email protected]
718-624-6994
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

Want this trial checked against your situation?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

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Eligibility criteria

Inclusion

Individuals of all ages with a self-reported diagnosis of DRPLA.
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.

Exclusion

Ataxia conditions other than DRPLA.
Failure to sign the IFC (and assent form, as needed).

What this trial measures

  • Patient- or caregiver-filled questionnaires1 year

    The questionnaires cover information about demographics, diagnosis, medical history, activities of daily living, functional mobility and disease burden.