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Can a massive natural history study unlock the secrets of rare movement disorders?

NCT ID NCT07798674

Knowledge-focused Sponsor: Heidelberg University Source: ClinicalTrials.gov ↗

What the study statuses mean

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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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Sep 01, 2026 · Last updated Sep 02, 2026 · Updated 1 time

Summary

This study follows thousands of people with ataxia, hereditary spastic paraplegia, and spastic ataxia, rare conditions that cause progressive problems with walking, balance, and coordination. Researchers will track how symptoms evolve using clinical exams, patient reports, digital movement measures, imaging, and biological samples. The goal is to identify reliable markers of disease progression and better outcome measures for future treatment trials. The study includes affected individuals, presymptomatic gene carriers, and family controls, all aged 5 and older.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could identify sensitive and patient-relevant outcome measures, speeding up the development of therapies for these rare neurological diseases.
What could go wrong
This is an observational study, not a treatment trial, so it will not directly test any therapy. The large scale and long follow-up may face challenges in participant retention and data consistency.

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 4,000 people

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

Started

Jul 2024

Expected to finish

Dec 2035

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

Children, adolescents, and adults aged 5 years and older are recruited through multicenter, international participation from specialized neurology and genetics clinics, patient registries, affected families, and the general community. The study includes individuals with ataxia, spastic ataxia, hereditary spastic paraplegia, or related phenotypes; presymptomatic mutation carriers; first- or second-degree relatives of affected individuals; and neurologically healthy community controls.

Ages

5 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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: General inclusion criteria: \- Age 5 or older Cohort 1: Affected * Clinical diagnosis of neurodevelopmental or neurodegenerative ataxia, spastic ataxia, HSP or related phenotype AND * Alternative causes of phenotype excluded Cohort 2: Presymptomatic mutation carriers \- Premanifest mutation carrier of (likely) pathogenic variant(s) in a disease gene associated with ataxia, spastic ataxia, HSP or related phenotype Cohort 3: Family controls - 1st or 2nd degree relative of a person with a clinical or genetic diagnosis of ataxia, spastic ataxia, HSP or related phenotype Cohort 4: Community controls \- Healthy individual unrelated to a person with neurodevelopmental or neurodegenerative ataxia, spastic ataxia, HSP or related phenotype Exclusion Criteria: * Presence of an alternative neurological or systemic condition that sufficiently explains the phenotype and is incompatible with ataxia, spastic ataxia, hereditary spastic paraplegia, or a related disorder. * Severe comorbidity or unstable medical condition that substantially interferes with study participation or interpretation of neurological and functional assessments. * Inability to comply with study procedures or follow-up requirements. * Lack of informed consent, including absence of consent by a legally authorized representative where required. * Current participation in an interventional clinical trial that may interfere with the objectives or outcome assessments of this observational study.

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Conditions

The condition(s) this trial relates to.

cerebellar ataxia Disease Progression hereditary spastic paraplegia spastic ataxia Spinocerebellar Degenerations

As listed by the trial registrant

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

Hereditary spastic paraplegia Spastic ataxia

How to take part

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

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    30 sites in 9 countries. The list below names each one and where it is.

  3. 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 ↗

  4. 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

  • Associazione La Nostra Famiglia - IRCCS Eugenio Medea

    RECRUITING

    Conegliano, TV, 31015, Italy

  • Centre of Hereditary Ataxias, Department of Neurology and Department of Pediatric Neurology, 2nd Faculty of Medicine, Charles University and Motol and Homolka University Hospital

    RECRUITING

    Prague, 150 00, Czechia

  • German Center for Neurodegenerative Diseases (DZNE) Bonn University Hospital Bonn Clinic for Parkinson's, sleep and movement disorders

    RECRUITING

    Bonn, 53127, Germany

  • German Center for Neurodegenerative Diseases (DZNE) Dresden; University Hospital Carl Gustav Carus Clinic and Polyclinic for Neurology

    RECRUITING

    Dresden, 01307, Germany

  • German Center for Neurodegenerative Diseases (DZNE) Göttingen

    RECRUITING

    Göttingen, 37075, Germany

  • German Center for Neurodegenerative Diseases (DZNE) Magdeburg, University Hospital Magdeburg, Department of Neurology

    RECRUITING

    Magdeburg, 39120, Germany

  • German Center for Neurodegenerative Diseases (DZNE) Munich, Munich University Hospital LMU, Department of Neurology

    RECRUITING

    München, 80336, Germany

  • Heidelberg University Hospital, Center for Child and Adolescent Medicine

    RECRUITING

    Heidelberg, 69124, Germany

  • Hospital Sant Joan de Déu Barcelona, Neuromuscular Diseases Unit

    RECRUITING

    Barcelona, 08950, Spain

  • IRCCS Fondazione Stella Maris, MEDMOL - Molecular Medicine, Neurogenetics and Neuromuscular Diseases

    RECRUITING

    Calambrone, Pisa, 56018, Italy

  • IRCCS Istituto Ospedale Pediatrico Bambino Gesù, Translational Pediatrics and Clinical Genetics

    RECRUITING

    Roma, 00146, Italy

  • Klinikum Vest GmbH, Treatment Center Knappschafts Hospital Recklinghausen, NeuroCentrum - Department of Neurology, Stroke Unit and Early Rehabilitation

    RECRUITING

    Recklinghausen, 45657, Germany

  • Medical University Innsbruck, Department of Neurology

    RECRUITING

    Innsbruck, 6020, Austria

  • Paris Brain Institute ICM CRMR Neurogénétique, Hôpital de la Pitié-Salpêtrière Sorbonne Université UM75 Inserm U1127 CNRS UMR 7225 47 boulevard de l'Hôpital, CS21414

    RECRUITING

    Paris, 75646, France

  • Radboud university medical center - Radboundumc, University Medical Center

    RECRUITING

    Nijmegen, 6525 GA, Netherlands

  • Ruhr University Bochum, Institute for Neuroinformatics (INI)

    RECRUITING

    Bochum, 44801, Germany

    Contact Email: •••••@•••••

  • Tallaght University Hospital, Neurology

    RECRUITING

    Dublin, Dublin 24, Ireland

  • University Hospital Erlangen, Department of Neurology

    RECRUITING

    Erlangen, 91054, Germany

  • University Hospital Essen, Department of Pediatric Neurology / Institute of Human Genetics

    RECRUITING

    Essen, 45147, Germany

  • University Hospital Göttingen, Department of Neurology

    RECRUITING

    Göttingen, 37075, Germany

  • University Hospital Heidelberg, Department of Neurology

    RECRUITING

    Heidelberg, 69120, Germany

  • University Hospital Marqués de Valdecilla-IDIVAL, Department of Neurology

    RECRUITING

    Santander, 39008, Spain

  • University Hospital Schleswig-Holstein , Department of Neurology

    RECRUITING

    Kiel, 24105, Germany

  • University Hospital and Faculty of Medicine Tübingen, Clinic for Paediatrics and Adolescent Medicine

    RECRUITING

    Tübingen, 72076, Germany

  • University Hospital and Faculty of Medicine Tübingen, Neurology with a Focus on Neurodegenerative Diseases

    RECRUITING

    Tübingen, 72076, Germany

  • University Hospital in Kraków, Neurology Clinical Department

    RECRUITING

    Krakow, 30-688, Poland

  • University Medical Centre Göttingen, Clinic for Paediatric and Adolescent Medicine

    RECRUITING

    Göttingen, 37075, Germany

  • University of Pisa, Azienda Ospedaliero Universitaria Pisana, Neurology

    RECRUITING

    Pisa, 56126, Italy

  • Università Cattolica del Sacro Cuore, Department of Neuroscience

    RECRUITING

    Roma, 00168, Italy

  • Vall d'Hebron Barcelona Hospital Campus, Vall d'Hebron University Hospital - Neurology Department

    RECRUITING

    Barcelona, Spain

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