ClinicalTrials.gg
RecruitingNCT05413291Updated Sep 18, 2026

Natural History Protocol for Movement Disorders

An observational study in Movement Disorder, Tremor and Parkinson's Disease, sponsored by National Institute of Neurological Disorders and Stroke (NINDS). Recruiting at 1 site in United States. Open to participants aged 2 Years to 100 Years, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-09-18.

Sponsored by National Institute of Neurological Disorders and Stroke (NINDS) · Observational

From the registry’s dates

  • Started Oct 2022; still recruiting 4 years later.
Study type
Observational
Model
Other
Time perspective
Prospective
Enrollment
4,000
Ages
2 Years to 100 Years
Sex
All
01

Study summary

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.

Read the detailed description

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.

02

Conditions studied

  • Movement Disorder
  • Tremor
  • Parkinson's Disease

Keywords

  • Movement Disorder
  • Tremor
  • Parkinson's Disease
  • Natural History
03

In context

Movement Disorders

371 studies on the registry are indexed under Movement Disorders; 102 are open to participants now.

This study's planned enrollment of 4,000 is above the median of 67 across 140 observational studies indexed under Movement Disorders.

Browse Movement Disorders studies →

Lead sponsor

National Institute of Neurological Disorders and Stroke (NINDS) is the lead sponsor of 601 studies on the registry; 56 are open to participants now.

Of its 18 completed or terminated interventional studies of FDA-regulated products, 8 (44%) have results posted.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
2 Years to 100 Years
Sexes eligible
All
Accepts healthy volunteers
Yes
Sampling method
Non-probability sample

Study population

The following population groups may participate: - Subjects with neurological disorders who are 2 years old or older, - Family members who are 2 years old or older of people with a neurological disorder

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

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 document.

Exclusion criteria

EXCLUSION CRITERIA:

An individual who meets the following criteria will be excluded from participation in this study:

-Being \< 2 years old.

Terms in these criteria, in plain language(1)

Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.

Informed consent

Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.

You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.

05

Study design

Observational model
Other
Time perspective
Prospective
Enrollment
4,000 participants (estimated)

Groups and cohorts

  • family members

    family members who are 2 years old or older of people with movement disorders

  • patients

    subjects with movement disorders who are 2 years old or older

06

What researchers measure

Primary outcomes

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

    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.

    Time frame: throughout protocol

07

Study locations

1 of 1 sites recruiting
  • National Institutes of Health Clinical Center
    Bethesda, Maryland 20892, United States
    Recruiting
    • For more information at the NIH Clinical Center contact Office of Patient Recruitment (OPR) · Contactccopr@nih.gov · 800-411-1222
08

References and documents

Individual participant data

Plan to share: Yes — All collected IPD stored in the database will be shared.

Supporting information: Study protocol

Time frame: Data will be shared no later than 1 year after the last patient visit and data will be shared for at least 2 years.

Access criteria: We do plan on broad data sharing. Therefore, there will be no restrictions on whom the de-identified data can be shared with.

09

Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Sep 18, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT05413291
Responsible party
Sponsor
First posted
Jun 10, 2022
Start date
Oct 17, 2022
Primary completion
Dec 31, 2030 (estimated)
Completion
Dec 31, 2030 (estimated)
Last update
Sep 18, 2026

Study contacts

Vivian S Koo
Contact
vivian.koo@nih.gov
(301) 435-8518
Debra J Ehrlich, M.D.
Contact
debra.ehrlich@nih.gov
(301) 443-7888
Debra J Ehrlich, M.D.
principal investigator · National Institute of Neurological Disorders and Stroke (NINDS)

Oversight

FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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