The NBIA community is devoted to building an internationally harmonized patient registry for NBIA patients. Up until the formation of an International Patient Registry in 2012, through funding from the European Union grant, “Treat Iron-Related Childhood-Onset Neurodegeneration” or TIRCON, only small local databases involving NBIA have existed. This fragmentation of data makes NBIA research more difficult.
The standardized collection of patient data and a biomaterial bank will provide one data site for researchers as they study large cohorts of patients in performing basic and clinical research.
The registry database is set up at the Institute for Medical Statistics and Epidemiology at TUM-MED in Munich, Germany. It is similar to the German rare disease registry mitoNET.
We will also establish and maintain a state of the art biomaterial bank for NBIA patient samples collected through our registry.
This registry and biomaterial bank is supported by the NBIA Alliance, an umbrella organization of NBIA lay advocacy groups around the world. We are united in our efforts to help make this endeavor successful.
We will have more information soon on how clinicians and families can participate in our International Patient Registry and Biomaterial Bank.