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TIRCON International NBIA Registry

Study acronym: TIRCON
StatusRecruiting
PhaseNot specified
Started
View on ClinicalTrials.gov ↗

Record History

  1. Re-verified, no change to tracked fieldsv3
  2. Site contacts updated at 1 of 9 sitesv2
  3. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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
Trial Details
NCT Number NCT05522374
Lead Sponsor LMU Klinikum
Collaborators: Seventh Framework Programme, NBIA Alliance
Conditions
(from sponsor)		 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
Related terms Familial apoceruloplasmin deficiency, Fatty Acid Hydroxylase-Associated Neurodegeneration, Kufor-Rakeb syndrome, Neuroaxonal Dystrophies, Neuroferritinopathy, Pantothenate Kinase-Associated Neurodegeneration, Woodhouse Sakati syndrome
Enrollment 2,000 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov