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TIRCON International NBIA Registry
Sponsor: LMU Klinikum
Summary
TIRCON-reg aims to * continue the provision of a global registry and natural history study for NBIA disorders * harmonize and cover existing national and single site registries * enable participation of countries and single sites that so far have no access to an NBIA registry * join forces in order to recruit sufficient numbers of patients * define the natural history of NBIA disorders * define the most appropriate outcome measures * inform the design and facilitate the conduction of clinical trials
Official title: TIRCON International NBIA (Neurodegeneration Associated With Brain Iron Accumulation) Patient Registry and Natural History Study
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
2000
Start Date
2012-06-14
Completion Date
2040-12
Last Updated
2025-06-05
Healthy Volunteers
No
Conditions
Locations (9)
Children's Hospital of Eastern Ontario, Division of Neurology, Department of Pediatrics
Ottawa, Canada
Charles University, Department of neurology
Prague, Czechia
LMU Klinikum, Friedrich-Baur-Institute
Munich, Bavaria, Germany
The Foundation of the Carlo Besta Neurological Institute, IRCCS
Milan, Italy
University medical Center Groningen (UMCG) Department of Neurology AB 51
Groningen, Netherlands
The Childrens Memorial Health Institute
Warsaw, Poland
University of Belgrade, Department of Movement Disorders and Degenerative Brain Diseases
Belgrade, Serbia
Hospital Vall d'Hebron - Institut de Recerca (VHIR), Pediatric Neurology, Movement Disorders
Barcelona, Spain
Hospital Sant Joan de Déu, Universitat de Barcelona, Servei de Neurología
Barcelona, Spain