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Scientists track rare brain diseases to uncover early warning signs

NCT ID NCT01799915

Knowledge-focused Sponsor: NYU Langone Health Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 800 adults with synucleinopathies—diseases like Parkinson's, Lewy body dementia, and multiple system atrophy—to learn how they develop and change over time. Researchers will track symptoms, biological markers, and early signs like dizziness on standing or dream-acting to find clues that predict disease spread to the brain. The goal is to better understand these rare conditions, not to test a new treatment.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 800 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jun 2011

Expected to finish

Dec 2026

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Primary autonomic disorders are a group of diseases that usually begin in adulthood with the inability to stand because of dizziness, lightheadedness and fainting. Symptoms are the result of a dysfunction in the autonomic nerves that regulate blood pressure and heart rate, and are either related to the accumulation of abnormal protein deposits and a primary neurodegenerative process (like Parkinson's disease, pure autonomic failure, dementia with Lewy bodies and multiple system atrophy), secondary to genetic abnormalities (dopamine-beta-hydroxylase deficiency), an autoimmune process (autoimmune ganglionopathy), or because of a direct injury to the nerves involved in buffering blood pressure fluctuations (acquired baroreflex failure).

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. Both male and female patients will be included 2. Aged 18 or over 3. Referred to any of the participating consortium sites with orthostatic intolerance, defined as symptoms of dizziness or lightheadedness in the standing position that disappear when supine. Exclusion Criteria: 1. Diabetes according to the American Diabetes Association criteria 2. Congestive heart failure 3. Lupus or other collagen vascular disease 4. Systemic illness thought to be responsible for the orthostatic intolerance 5. Drug-induced orthostatic hypotension (i.e., the use of alpha-blockers, diuretics, tricyclic antidepressants or others thought by the investigator to play an important role in the patient's orthostatic hypotension) 6. Isolated vasovagal syncope 7. Inability to comply with the protocol, e.g. uncooperative attitude, inability to return for follow-up visits, and unlikelihood of completing the study.

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Conditions

The condition(s) this trial relates to.

Lewy body dementia Lewy Body Disease multiple system atrophy Parkinson disease primary orthostatic hypotension pure autonomic failure REM sleep behavior disorder synucleinopathy

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Dementia with lewy bodies Multiple system atrophy Neurogenic orthostatic hypotension Parkinson disease Patients with synucleinopathies Pure autonomic failure Rem sleep behavior disorder Shy-Drager disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    8 sites in 4 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Beth Israel Deaconess Medical Center

    RECRUITING

    Boston, Massachusetts, United States

  • BioCruces Research Institute - Hospital Universitario de Cruces

    RECRUITING

    Bilbao, Spain

  • FLENI - Fundación para la Lucha contras las Enfermedades Neurológicas

    RECRUITING

    Buenos Aires, Argentina

  • Mayo Clinic

    RECRUITING

    Rochester, Minnesota, United States

  • NYU Medical Center

    RECRUITING

    New York, New York, 10016, United States

  • Seoul National University Hospital

    RECRUITING

    Seoul, South Korea

  • University of Michigan

    RECRUITING

    Ann Arbor, Michigan, United States

  • Vanderbilt Univeristy

    RECRUITING

    Nashville, Tennessee, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.