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TIRCON final conference in Munich: „International patients register and bio-bank created, major progress achieved in research on NBIA”

15.12.2015



After 4 years, the EU-supported research project TIRCON drew to an end with a final conference in Munich in October 2015. TIRCON („Treat Iron-Related Childhood-Onset Neurodegeneration“) had been examining the rare NBIA disease family (“Neurodegeneration with Brain Iron Accumulation”) under the direction of Prof. Thomas Klopstock, from the University Hospital of Ludwig-Maximilian University in Munich. 70 participants, among which 13 project groups, looked back on 4 very successful years of collaborative work.

„Neurodegeneration with Brain Iron Accumulation“ (NBIA) is characterized by iron accumulation within the brain, a neurologic degeneration that usually starts during childhood, with a dramatic evolution. Thanks to TIRCON, major progress could be made in researching the disease. At the heart of the project was the set-up and implementation of a multicentre clinical trial with the iron-fixating substance Deferiprone, which is currently being tested at 4 different hospitals in Europe and North America. 89 patients are participating. The Canadian company ApoPharma, producer of the substance, significantly supported the trial and enabled a follow-up trial longer than the TIRCON project itself.

The cooperation partners were also instrumental in creating an international patients register and a bio-bank, which will be continued thanks to special support from the Munich Technical University and with a growing participation of external treating centers. Moreover, promising pre-clinical trials could identify decisive bio-markers of the disease, and helped develop new therapy concepts in animal trials. This was realized in collaboration with the bio-tech ACIES BIO in Liubliana (Slovenia). The outstanding commitment of patients’ representatives was key to establishing further national patients’ networks in nations throughout the world. Major publications could also reach a broad audience and raise awareness about NBIA.

Prof. Klopstoch is more than satisfied with the results: “As TIRCON Coordinator, I am looking back on an exciting scientific and human adventure. The multi-channel perspective was a successful strategy to enhance research and treatment for NBIA-patients on various levels. As a legacy of the 4 years of this project’s lifespan, we will be able to contribute further therapies – be it through the clinical network we built, the international patients’ register, the bio-bank and the research activities we initiated. I am very happy that the TIRCON-consortium could count on BayFOR as a strong partner on our side, all along.”

Facts & figures:

  • Program: 7th frame-program for research, FP7-HEALTH
  • Duration: November 2011 - October 2015
  • Total subventions: 5,2 million Euros, of which 2,4 million Euros for Bavaria
  • Project code: 277984-2
  • Coordinator: Prof. Dr. med. Thomas Klopstock, Friedrich-Baur-Institut an der Neurologischen Klinik, Klinikum der Ludwig-Maximilians-Universitat Munchen
  • Participating countries: Canada, Germany, Italy, Netherlands, Poland, Slovenia, UK, USA
  • Role of BayFOR: Project management, Dissemination, Ethics - cf. Dr. Florence Gauzy
  • Internet: www.tircon.eu