Registry for pediatric deep brain stimulation outcomes

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study aims to create a multicenter registry to collect and analyze clinical data on pediatric patients who have undergone deep brain stimulation (DBS) for various movement disorders. By pooling data from multiple centers, the registry will facilitate large-scale analyses of the safety and efficacy of DBS in children, addressing the current lack of comprehensive evidence. The study will also explore factors influencing DBS responsiveness and the long-term effects of the treatment on quality of life. This centralized repository is essential for improving clinical practices and outcomes for pediatric patients with conditions like dystonia and Tourette syndrome.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Female or male patients between ages of 0-18 years.
* Having received or scheduled to receive DBS for any neurological movement disorder.
* Parents or legal guardians are able to provide written consent for prospective enrollment.

Where it's running

• Boston Children's Hospital
  Boston, Massachusetts, United States Recruiting

Study contacts

• Study coordinator: Darius Ebrahimi-Fakhari, MD, PhD
• Email: movementdisorders@children.harvard.edu
• Phone: 617-355-0097

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Registry and natural history of epilepsy-dyskinesia syndromes

  This registry will collect health data and biological samples from people of all ages who have a genetic diagnosis of epilepsy-dyskinesia syndromes to see how their genes relate to their movement and seizure symptoms over time.

  Recruiting Boston Children's Hospital · Boston, Massachusetts · NCT06967727

• Understanding epilepsy-dyskinesia syndromes in children

  This study is trying to learn more about epilepsy-dyskinesia syndromes in children by gathering information from different countries to see how these movement and seizure disorders are related.

  Recruiting Boston Children's Hospital · Boston, Massachusetts · NCT06585605

• Investigating the relationship between genetic mutations and brain changes in dystonia

  This study is trying to see how genetic changes linked to dystonia affect the brain in people with the condition compared to healthy individuals.

  Recruiting University of Texas Southwestern Medical Center · Dallas, Texas · NCT03428009

• Low-intensity focused ultrasound for movement and seizure disorders

  This trial will try low-intensity focused ultrasound (LIFUS) to see if it can safely change brain activity in people with movement disorders or epilepsy.

  Recruiting University Health Network, Toronto · Toronto, Ontario · NCT07417280

• Measuring brain network activity to predict and improve outcomes in children with dystonia

  This project will test whether noninvasive brain and muscle recordings, and comparing DBS on versus off, can predict and help improve motor outcomes for children with dystonia.

  Recruiting Children's Hospital Medical Center, Cincinnati · Cincinnati, Ohio · NCT07325175

• Long-read genome sequencing to help diagnose dystonia

  Researchers test long-read genome sequencing to see if it can provide a genetic diagnosis for people with dystonia and related movement disorders when standard tests have not.

  Recruiting University Hospital, Strasbourg, France · Montpellier and 3 other locations · NCT06999096

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.