TIRCON International NBIA Registry

Launched by LMU KLINIKUM · Aug 29, 2022

Keywords

ClinConnect Summary

The TIRCON International NBIA Registry is a clinical trial focused on understanding a group of rare disorders known as Neurodegeneration With Brain Iron Accumulation (NBIA). These conditions affect how the brain functions, leading to a build-up of iron and causing various neurological symptoms. The trial aims to create a global registry that collects information about these disorders, improving our understanding of their progression and helping to design better clinical trials for new treatments. By combining existing data and including more patients from different countries, the study hopes to gather enough information to clearly define how these disorders develop and what outcomes are important for patients.

To participate in this trial, individuals should have a suspected or confirmed diagnosis of an NBIA disorder and be willing to take part in the study. There are no age or gender restrictions for participation. Those who join can expect to contribute to important research that may lead to better care and treatment options for themselves and others with similar conditions. This is a chance to be part of a larger effort to advance knowledge about NBIA disorders, even if you have not had access to a registry before.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • suspected or confirmed NBIA
• • willingness to participate
• Exclusion Criteria:
• • unwillingness to participate