TIRCON International NBIA Registry
Recruiting
Observational Study
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)
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 2,000 (estimated)
- Sponsor
- LMU Klinikum · Other
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About This Trial
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 t…
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* suspected or confirmed NBIA
* willingness to participate
Exclusion Criteria:
* unwillingness to participate
Contacts