TIRCON International NBIA Registry

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

NCT Number	NCT05522374
Lead Sponsor	LMU Klinikum Collaborators: Seventh Framework Programme, NBIA Alliance
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 +3 more
Enrollment	2,000 participants
Start Date	2012-06-14
Primary Completion	2040-12 (estimated)
Study Completion	2040-12 (estimated)
Updated on ClinicalTrials.gov	2025-06-05