The journal "Frontiers in Neurology" has now published a retrospective article on TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration) on the topic of "Networks for Movement Disorders". From 2011 to 2015, TIRCON was an international NBIA research project funded by the European Union under the 7th Research Framework Programme (FP7). 13 research institutions, clinical centers, industrial companies and patient organizations from 8 countries have collaborated in a consortium with the aim of advancing research in the field of NBIA and improving clinical care. Hoffnungsbaum e.V. As a partner in the TIRCON consortium, he was responsible for the public relations / information provision department.
TIRCON, coordinated by the Friedrich Baur Institute at the University Hospital of the Ludwig-Maximilians-University in Munich, comprised 8 research areas. Core projects were the international multicenter clinical trial with the iron chelator deferiprone in PKAN, as well as the global patient registry and the biobank.
After the end of EU funding, the research and care infrastructure built in TIRCON was consolidated and expanded thanks to financial support from industry and NBIA patient organisations. For example, the NBIA patient registry now includes data from more than 400 NBIA patients. In addition, TIRCON continues to exist as a network beyond EU funding and has now also been able to win external clinical centers for cooperation.
TIRCON can be regarded as an exemplary international network for an extremely rare neurological disease group and has directly or indirectly shaped the current research and care landscape for NBIA diseases in many countries, not least through the close cooperation with the NBIA patient community, which led to the establishment of new NBIA patient organizations in several countries.
If you want to learn more about TIRCON, you can find out more at: TIRCON. The full article appeared in the current issue of "Frontiers in Neurology":
"Treat Iron-related Childhood-Onset Neurodegeneration (TIRCON) – An International Network on Care and Research for Patients with Neurodegeneration with Brain Iron Accumulation (NBIA)"