Registries are databases of people with certain diseases or conditions that store confidential data such as name, contact information and medical condition. Registries can be national or international in scope. Registries are particularly important for rare diseases like Alport Syndrome, because no one medical center will have access to enough people with the disease to carry out valid research studies. Registries are especially valuable for treatment trials because they are able to quickly identify and contact eligible individuals willing to participate in research.
The Alport Syndrome Treatments and Outcomes Registry (ASTOR) was founded at the University of Minnesota in 2007 and is now the largest Alport Syndrome registry in the world, with connections to registries in China, France and Germany. ASTOR has funding from the National Institutes of Health to demonstrate that clinical trials in Alport Syndrome are feasible and are not likely to fail because of inadequate participation. ASTOR is working with pharmaceutical companies to develop new treatments for Alport Syndrome. ASTOR and the Alport Syndrome Foundation have formed a strong alliance based on our shared goal to improve the lives of people with Alport Syndrome by supporting the development of safe new treatments for the disease.
The Alport Syndrome Research Collaborative (ARC) has published Clinical Practice Recommendations for the Treatment of Children with Alport Syndrome in Pediatric Nephrology, the journal of the International Pediatric Nephrology Association. The recommendations are intended to delay end-stage kidney failure by standardizing therapy for children with Alport Syndrome. Recommendations for adults with Alport Syndrome (Expert Guidelines for the Management of Alport Syndrome and Thin Basement Membrane Nephropathy) have been published in the Journal of the American Society of Nephrology.
Additional resources from ASTOR:
- Clinical Practice Recommendations for treating children with Alport Syndrome
- Dr. Kashtan‘s synopsis of the Clinical Practice Recommendations for parents
- Expert Guidelines for Management of Alport Syndrome for treating adults with Alport Syndrome
- Register for the patient registry
Contact Sarah Lemmage at (612) 626-7632 for additional information about ASTOR, ARC, or their current research projects.