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TIRCON International NBIA Registry

NCT05522374 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 2000

Last updated 2025-06-05

No results posted yet for this study

Summary

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

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
  • Woodhouse Sakati Syndrome
  • COASY Protein-associated Neurodegeneration (CoPAN)
  • PLA2G6-Associated Neurodegeneration (PLAN)

Sponsors & Collaborators

  • Seventh Framework Programme

    collaborator OTHER

  • NBIA Alliance

    collaborator UNKNOWN

  • LMU Klinikum

    lead OTHER

Principal Investigators

  • Thomas Klopstock, Prof. Dr. · LMU Klinikum, Friedrich-Baur-Institute

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2012-06-14
Primary Completion
2040-12-31
Completion
2040-12-31

Countries

  • Canada
  • Czechia
  • Germany
  • Italy
  • Netherlands
  • Poland
  • Serbia
  • Spain

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT05522374 on ClinicalTrials.gov