TIRCON International NBIA (Neurodegeneration Associated With Brain Iron Accumulation) Patient Registry and Natural History Study

Status: Recruiting
Location: See all (8) locations...
Study Type: Observational
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

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• suspected or confirmed NBIA

• willingness to participate

Locations
Other Locations
Canada
Children's Hospital of Eastern Ontario, Division of Neurology, Department of Pediatrics
RECRUITING
Ottawa
Germany
LMU Klinikum, Friedrich-Baur-Institute
RECRUITING
Munich
Italy
The Foundation of the Carlo Besta Neurological Institute, IRCCS
RECRUITING
Milan
Netherlands
University medical Center Groningen (UMCG) Department of Neurology AB 51
RECRUITING
Groningen
Poland
The Childrens Memorial Health Institute
RECRUITING
Warsaw
Serbia
University of Belgrade, Department of Movement Disorders and Degenerative Brain Diseases
RECRUITING
Belgrade
Spain
Hospital Sant Joan de Déu, Universitat de Barcelona, Servei de Neurología
ACTIVE_NOT_RECRUITING
Barcelona
Hospital Vall d'Hebron - Institut de Recerca (VHIR), Pediatric Neurology, Movement Disorders
ACTIVE_NOT_RECRUITING
Barcelona
Contact Information
Primary
Boriana Büchner, Dr.
boriana.buechner@med.uni-muenchen.de
+49 89 4400
Backup
Almut Bischoff
almut.bischoff@med.uni-muenchen.de
+49 89 4400
Time Frame
Start Date: 2012-06-14
Estimated Completion Date: 2040-12
Participants
Target number of participants: 2000
Treatments
NBIA Patients
Patients with suspected or confirmed NBIA
Sponsors
Collaborators: NBIA Alliance, Seventh Framework Programme
Leads: LMU Klinikum

This content was sourced from clinicaltrials.gov