NBIA patient registry and biobank

Both provide important evidence for developing and testing new therapies for NBIA and need your support.

NBIA patients can participate in an international, web-based patient registry for all forms of NBIA, as well as a biomaterial bank for NBIA as a research resource. Both help researchers learn more about symptomatology and disease progression in NBIA forms. The information researchers gain from the registry and biobank provides them with important evidence to develop and test new therapies. Therefore, we encourage all patients and their families to consider enrolling in the Patient Registry and Biobank.

We have also provided you with all the important information in a Brochure summarized.

The establishment of the registry and biobank took place within the framework 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. For more information on TIRCON, please visit www.tircon.eu.

How does the NBIA patient registry work?

The registry is a web-based system for recording patient data. It collects pseudonymous information on diagnostics, disease progression and therapies. The registry is managed by physicians and updated regularly.

The patient registry enables international collaboration between scientists and physicians. 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 sufferers can support the patient registry! Talk to your doctor about it!

Contact person:
Ludwig Maximilian University
Neurological Clinic and Polyclinic
Friedrich Baur Institute
Mr. Prof. Dr. med. Thomas Klopstock
Ziemssenstr. 1a, 80336 Munich
Tel.: +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.

Therefore, it is important that NBIA patients provide blood samples and possibly other tissue samples for the biomaterial bank!

Contact person:
Munich University of Technology
Klinikum rechts der Isar
Institute for Human Genetics
Dr. Arcangela Iuso
Trogerstr. 32, 81675 Munich
Tel.: +49 (o)89 3187-3568
E-mail: nbiabiobank.ihg.med@tum.de

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