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Recruiting

NCT Number: NCT05413291

Natural History Protocol for Movement Disorders

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.

Recruiting

Interested in participating?

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Key information

Age range

2 year–100 year

Sex eligibility

All sexes

Study type

Observational

Primary location

National Institutes of Health Clinical Center

Bethesda, Maryland, 20892, United States

Location status: Recruiting

Location contact

For more information at the NIH Clinical Center contact Office of Patient Recruitment (OPR)

CONTACT

[email protected]

800-411-1222 ext. TTY dial 711

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

  • 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.

Treatment and study plan

Primary outcomes

  1. to screen patients with movement disorders and family members of patients with movement disorders for enrollment in additional research protocols

    Time frame: throughout protocol

    The goal is to screen patients with movement disorders and family members of patients with movement disorders for enrollment in additional research protocols. No investigational treatments will be administered on this protocol and the NIH physicians will be playing a consultative role to the patient s primary physician.

Study contacts

Contact information is provided by the study sponsor or research team.

Debra J Ehrlich, M.D.

CONTACT

[email protected]

(301) 443-7888

Vivian S Koo

CONTACT

[email protected]

(301) 435-8518

Sponsors and collaborators

Lead sponsor

National Institute of Neurological Disorders and Stroke (NINDS)

Nih

Registry information

Important dates

Study start
2022
Primary completion
2030
Study completion
2030
First posted
Jun 10, 2022
Registry last updated
Jun 25, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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