Links
NBIA Alliance is an international umbrella organization for NBIA lay advocacy groups with associations beside Switzerland in Canada, France, Germany, Italy, Netherlands, Spain, Hungary, Poland and USA.
- Hoffnungsbaum e.V. (Germany)
- Associazione Italiana Sindromi Neurodegenerative Da Accumulo Di Ferro (Italy)
- Stichting Ijzersterk (Netherlands)
- ENACH Asociación (Spain)
- NBIA Hungary
- Association NBIA Poland
- NBIA Disorders Association (USA)
- Association International DNAI (France)
- NBIA Canada
In other countries, there are several patient advocacy associations with interesting information about NBIA in general and national research programs and activities:
www.nbiadisordersassociation.org
NBIA Australia
International Patient Registry & Biomaterial Bank
Both provide important information for the development and review of new therapies for NBIA and need your support.
NBIA patients can participate in an international, web-based patient registry for all forms of NBIA and a biomaterial bank for NBIA as a research resource. Both help researchers to learn more about the symptoms and course of disease in NBIA forms. The information researchers obtain from the registry and the biobank provides them with important information for the development and testing of new therapies. We would therefore like to ask all patients and their families to consider inclusion in the patient registry and biobank.
We have also summarised all important information in a brochure.
The register and biobank were established as part of the TIRCON research project, which ran from November 2011 to October 2015. The registry and biobank will, however, continue to operate beyond the end of TIRCON. More information about TIRCON can be found at www.tircon.eu.
How does the NBIA patient register work?
The Registry is a web-based system for recording patient data. It collects pseudonymised data on diagnosis, course of disease and therapies. The register is maintained by medical professionals and is updated regularly.
The patient register enables international cooperation between scientists and doctors. The data collected can be used to gain better insights into the clinical picture of NBIA diseases. In addition, the standardised data can be used for study purposes.
By providing their pseudonymised clinical data, NBIA patients can support the patient register! Talk to your doctor about this!
contact person:
Ludwig-Maximilians-University
Neurological clinic and polyclinic
Friedrich Baur Institute
Prof. Dr. med. Thomas Klopstock
Ziemssenstr. 1a, 80336 Munich
Phone: +49 (0)89-4400-57425 or -57421
e-mail: tircon@med.uni-muenchen.de
What is a biobank?
In a biomaterial bank, for example, blood and tissue samples are collected and systematically documented. These can contribute to a better understanding of the biochemical processes of NBIA diseases and to therapy research.
It is therefore important that NBIA patients provide blood samples and possibly other tissue samples for the biomaterial bank!
Contact person:
Technical University of Munich
Hospital on the right side of the Isar Institute for Human Genetics
Dr. Arcangela Iuso Trogerstr. 32, 81675 Munich
Phone: +49 (o)89 3187-3568
e-mail: nbiabiobank.ihg.med@tum.de