RecruitingNCT05522374

TIRCON International NBIA Registry

TIRCON International NBIA (Neurodegeneration Associated With Brain Iron Accumulation) Patient Registry and Natural History Study

Sponsor

LMU Klinikum

Enrollment

2,000 participants

Start Date

Jun 14, 2012

Study Type

OBSERVATIONAL

Conditions

Neurodegeneration With Brain Iron Accumulation (NBIA)Pantothenate Kinase-associated Neurodegeneration (PKAN)Beta-Propeller Protein-Associated Neurodegeneration (BPAN)Mitochondrial Membrane Protein Associated Neurodegeneration (MPAN)Fatty Acid Hydroxylase-associated Neurodegeneration (FAHN)Kufor Rakeb Syndrome Neuroferritinopathy Aceruloplasminemia Woodhouse Sakati Syndrome COASY Protein-associated Neurodegeneration (CoPAN)PLA2G6-Associated Neurodegeneration (PLAN)

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

Eligibility

Plain Language Summary

Simplified for easier understanding

This study is building an international registry to collect data on patients with Neurodegeneration with Brain Iron Accumulation (NBIA) — a rare group of genetic disorders that cause iron to build up abnormally in the brain, leading to movement problems, muscle stiffness, and other neurological symptoms. The goal is to improve understanding of these rare diseases. You may be eligible if: - You have a suspected or confirmed diagnosis of NBIA (any subtype) - You are willing to participate and share your health information You may NOT be eligible if: - You are unwilling to participate Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

Interested in this trial?

Get notified about updates and connect with the research team.

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

View Full Details on ClinicalTrials.gov

For the most up-to-date information, visit the official listing.

Visit

NCT05522374

Related Trials

Neurodegenerative Diseases Progression Markers (MARKERS-NDD)

NCT065967461 location