NBIA patient registry and biobank
Both provide important clues for the development and testing 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 will help researchers to learn more about the symptoms and progression of NBIA. The information researchers gain from the registry and biobank will provide them with important clues for developing and testing new therapies. We would therefore like to ask all patients and their families to consider joining the patient registry and biobank.
We have also provided you with all the important information in a Brochure summarized.
The register and biobank were set up as part of the TIRCON research project, which ran from November 2011 to October 2015. However, the registry and biobank will continue beyond the end of TIRCON. You can find more information about TIRCON at www.tircon.eu.
How does the NBIA patient register work?
The register is a web-based system for recording patient data. It collects pseudonymized information on diagnostics, disease progression and therapies. The register is managed and regularly updated by medical professionals.
The patient registry enables international collaboration between scientists and doctors. The collected data can be used to gain better insights into the clinical picture of NBIA diseases. In addition, the standardized data collected can be used for study purposes.
By providing their pseudonymized clinical data, NBIA patients can support the patient registry! Talk to your doctor about it!
Contact person:
Ludwig Maximilian University
Neurology Clinic and Polyclinic
Friedrich Baur Institute
Prof. Dr. med. Thomas Klopstock
Ziemssenstr. 1a, 80336 Munich
E-mail: fbi.mito@med.uni-muenchen.de
What is a biobank?
Blood and tissue samples, for example, are collected and systematically documented in a biomaterial bank. 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 also other tissue samples for the biomaterial bank!
Contact person:
Technical University of Munich
Klinikum rechts der Isar
Institute of Human Genetics
Dr. Arcangela Iuso
Trogerstr. 32, 81675 Munich
E-mail: nbiabiobank.ihg.med@tum.de
