Patient Information English
What is TIRCON?
TIRCON is a research project dedicated to a group of rare neurological disorders called Neurodegeneration with Brain Iron Accumulation (NBIA). TIRCON stands for "Treat Iron-Related Childhood-Onset Neurodegeneration". Thirteen project partners from eight countries are involved in TIRCON. The aim is an improvement of treatment and care for NBIA patients. TIRCON includes the following tasks:
- Setup of a patient registry
- Setup of a Biomaterial bank
- Development of Biomarkers
- A trial of Deferiprone in patients with PKAN
- Preclinical studies with Pantethine
For more information about TIRCON, click here.
How can patients participate?
NBIA patients could contribute to the project by…
- providing pseudonymized clinical data for the patient registry to help researchers gain insight into the clinical course of the various NBIA disorders.
- providing blood samples and maybe other tissue samples for the biomaterial bank to gain a better insight into the biochemical processes of the disease.
For more information about the patient registry and the biobank, click here.
PKAN patients had the opportunity until March 2015 to…
- participate in the clinical Deferiprone trial. The trial investigates whether the drug Deferiprone shows positive effects on the course of the disease.
The clinical trial is closed. The results are expected to become available in 2017.
Patient organization
NBIA Disorders Association