TIRCON International NBIA Registry

Recruiting now

Conditions studied: 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)

In brief

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

Key facts

Study ID

NCT05522374

Run by

LMU Klinikum

People needed

2000

Starts

2012-06-14

Expected to finish

2040-12-01

Last updated by the study team

2025-06-05

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• suspected or confirmed NBIA
• willingness to participate

You may not qualify if…

• unwillingness to participate

Where it is running

• Children's Hospital of Eastern Ontario, Division of Neurology, Department of Pediatrics — Ottawa, Canada (enrolling)
• Charles University, Department of neurology — Prague, Czechia (enrolling)
• LMU Klinikum, Friedrich-Baur-Institute — Munich, Bavaria, Germany (enrolling)
• The Foundation of the Carlo Besta Neurological Institute, IRCCS — Milan, Italy (enrolling)
• University medical Center Groningen (UMCG) Department of Neurology AB 51 — Groningen, Netherlands (enrolling)
• The Childrens Memorial Health Institute — Warsaw, Poland (enrolling)
• University of Belgrade, Department of Movement Disorders and Degenerative Brain Diseases — Belgrade, Serbia (enrolling)
• 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

Full record on ClinicalTrials.gov

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