Global registry for neurodegeneration with brain iron accumulation disorders
Official title: TIRCON International NBIA (Neurodegeneration Associated With Brain Iron Accumulation) Patient Registry and Natural History Study
Run by LMU Klinikum · NCT05522374 · Data updated 2026-11-12
This study is creating a global registry to help people with neurodegeneration disorders linked to brain iron buildup by tracking their conditions and improving future treatments.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 2000 (estimated) |
| Sponsor | LMU Klinikum Academic / other |
| Locations | 9 sites (Ottawa and 8 other locations) |
| Status | Recruiting |
| Started | June 14, 2012 |
| Main results expected | December 2040 |
| Study ends | December 2040 |
| Registry record updated | June 5, 2025 |
| Trial ID | NCT05522374 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals with suspected or confirmed NBIA disorders who are willing to participate.
✕Probably not a fit
Patients who are unwilling to participate in the registry will not benefit from this initiative.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The TIRCON International NBIA Registry aims to create a comprehensive global registry and natural history study for various neurodegeneration disorders associated with brain iron accumulation. It seeks to harmonize existing national and single-site registries, allowing participation from countries and sites without prior access to an NBIA registry. The study focuses on defining the natural history of these disorders and identifying appropriate outcome measures to inform future clinical trials. Data is collected annually or biannually for rapidly progressing cases, ensuring a robust understanding of disease progression.
Why it matters
Potential benefit: If successful, this registry could significantly enhance the understanding and management of NBIA disorders, leading to improved patient outcomes.
How similar studies have gone: Other similar registries have shown success in enhancing understanding and treatment approaches for rare neurodegenerative disorders, indicating a promising potential for this initiative.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * suspected or confirmed NBIA * willingness to participate Exclusion Criteria: * unwillingness to participate
Where it's running
-
Children's Hospital of Eastern Ontario, Division of Neurology, Department of Pediatrics
Ottawa, Canada Recruiting -
Charles University, Department of neurology
Prague, Czechia Recruiting -
LMU Klinikum, Friedrich-Baur-Institute
Munich, Bavaria, Germany Recruiting -
The Foundation of the Carlo Besta Neurological Institute, IRCCS
Milan, Italy Recruiting -
University medical Center Groningen (UMCG) Department of Neurology AB 51
Groningen, Netherlands Recruiting -
The Childrens Memorial Health Institute
Warsaw, Poland Recruiting
Show 3 more locations
-
University of Belgrade, Department of Movement Disorders and Degenerative Brain Diseases
Belgrade, Serbia Recruiting -
Hospital Vall d'Hebron - Institut de Recerca (VHIR), Pediatric Neurology, Movement Disorders
Barcelona, Spain Active not recruiting -
Hospital Sant Joan de Déu, Universitat de Barcelona, Servei de Neurología
Barcelona, Spain Active not recruiting
Study contacts
- Principal investigator: Thomas Klopstock, Prof. Dr. — LMU Klinikum, Friedrich-Baur-Institute
- Study coordinator: Boriana Büchner, Dr.
- Email: boriana.buechner@med.uni-muenchen.de
- Phone: +49 89 4400
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.