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Following how movement disorders develop over time

Researchers are studying the course of movement disorders, including how symptoms develop and how these conditions may run in families.

Learning by observing or collecting information · Study reference: NCT05413291

Plain-language introduction written with AI from the registry; not independently checked by a clinician. Read the original details below ↓

Open the official registry record ↗

Who can join?

Ages 2 years to 100 years · Also accepts healthy volunteers

These are starting points, not the full rules. The research team can tell you whether the study is right for your situation.

Read all the rules for taking part

Sex eligibility reported by registry: all

* INCLUSION CRITERIA: In order to be eligible to participate in this study, an individual must meet all of the following criteria: * Stated willingness to comply with all study procedures and availability for the duration of the study * Male or female, aged 2 and above * Either one of these: * Have or suspected to have a diagnosis of a movement disorder. * Family member of someone who has or is suspected of having a diagnosis of a movement disorder. * Ability of subject or Legally Authorized Representative (LAR) to understand and the willingness to sign a written informed consent document. EXCLUSION CRITERIA: An individual who meets the following criteria will be excluded from participation in this study: -Being \< 2 years old.
Full study name & original research details

Official study title

Natural History Protocol for Movement Disorders

Original description

Background: A movement disorder is a condition that causes a person s body to move in ways that are not normal. There are different types. Some disorders cause movements people can t control, such as tics or shaking. Some cause reduced or slow movements. Movement disorders can cause disability in people. Sometimes members of the same family will have the same disorder. Researchers want to learn more about how people develop these disorders. This research could lead to better treatments. Objective: This natural history study will collect data on people with different types of movement disorders. It will also collect data on their family members. The data will support further research. Eligibility: Children and adults aged 2 years and older who have a movement disorder. Family members of people with movement disorders are also needed. Design: Participants will undergo screening. They will have a physical exam. Researchers will look at their existing medical images. Any photographs or videos of their movements will also be reviewed. Most participants will come to the NIH clinic for only 1 visit. They will answer questions about their condition. They will have normal tests used to diagnose their condition. They may have blood tests and different types of imaging scans. They may have tests to see how well their nerves function. The tests used will depend on the type of disorder they have. Family members will have some of the same tests as people with disorders. Participants will not receive any new treatments. Some participants may be asked to return for a follow-up visit. Up to 4000 people may participate.

Further description from the registry

Study Description: This is a Natural History and Screening protocol for movement disorders, no research procedures will be done but the resulting data will be used for research. Objectives: Primary Objective: To collect data as part of standard of care evaluation of patients who have or are suspected to have a movement disorder and their family members for use in future secondary research. Endpoints: Collection of data from clinical/routine care that will contribute to/be used for future research.

Conditions reported: Movement Disorder; Tremor; Parkinson's Disease

Study type
Observational
Interventions
Not reported
Phases
Not reported
Sponsor
National Institute of Neurological Disorders and Stroke (NINDS)
Start date reported by registry
2022-10-17 (actual)

Registry updated: 2026-09-18 · Status last verified by the registry submitter: 2026-09-16

Registry records retrieved 2026-10-11 (UTC). Individual records may have older updates. Recruitment and eligibility must be confirmed with the study team.

Contact the research team

Public study contacts supplied to the registry. Ask whether recruitment is still open and what participation involves.

Vivian S Koo · (301) 435-8518 · vivian.koo@nih.gov

Debra J Ehrlich, M.D. · (301) 443-7888 · debra.ehrlich@nih.gov

Study locations

Site status can differ from overall study status. “Status not reported” means local availability needs confirmation. Remote participation and travel arrangements must be checked with the team.

National Institutes of Health Clinical Center

Bethesda, Maryland, United States

Recruiting

For more information at the NIH Clinical Center contact Office of Patient Recruitment (OPR) · 800-411-1222 · ccopr@nih.gov

The original descriptions and participation rules come from the registry. Participation is voluntary and does not guarantee benefit.