NBIA research took a big leap forward with the European Union’s November 2011 award of a collaborative four-year grant worth $7.02 million in U.S. dollars, or 5.2 million Euros.
Treat Iron-Related Childhood-Onset Neurodegeneration (TIRCON) is a research consortium consisting of 13 partners from eight countries. Researchers consider the collaborative effort to be historic for the NBIA community and are excited about the grant’s potential to lead to new insights and potential treatments for NBIA-affected individuals.
The goals of TIRCON are:
- Set up an international NBIA patient registry
- Establish a biobank
- Develop biomarkers for the disease
- Conduct a randomized clinical trial of the iron-chelating drug Deferiprone in PKAN
- Develop pantethine derivatives for treating PKAN