Health Trials

TIRCON International NBIA Registry

ConditionsNeurodegeneration 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 SyndromeNeuroferritinopathyAceruloplasminemiaWoodhouse Sakati SyndromeCOASY Protein-associated Neurodegeneration (CoPAN)PLA2G6-Associated Neurodegeneration (PLAN)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorLMU Klinikum

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 the most appropriate outcome measures * inform the design and facilitate the conduction of clinical trials

Eligibility criteria

Qualifiers

suspected or confirmed NBIA

willingness to participate

Disqualifiers

unwillingness to participate

Trial design

Treatments tested in this trial

  • Not listed

Trial groups

2,000 Participants
are grouped into 1 trial group

Locations

9
Canada
Children's Hospital of Eastern Ontario, Division of Neurology, Department of PediatricsK1H 8L1, Ottawa Canada
Czechia
Charles University, Department of neurology120 00, Prague Czechia
Germany
LMU Klinikum, Friedrich-Baur-Institute80336, MunichBavaria, Germany
Italy
The Foundation of the Carlo Besta Neurological Institute, IRCCS20133, Milan Italy

Sponsors and collaborators

LMU Klinikum

Lead sponsor

Seventh Framework Programme

Collaborator

NBIA Alliance

Collaborator

Source ClinicalTrials.gov