In 1927, Dr. Cecil Alport published a paper in the British Medical Journal in which he discussed his study of several generations of a family with what earlier physicians had called “hereditary familial congenital haemorrhagic nephritis." So how did this condition come to be named after Dr. Alport?
Reata Pharmaceuticals announced plans to initiate a study using the drug bardoxolone methyl in the treatment of chronic kidney disease caused by Alport Syndrome. The clinical trial (CARDINAL) will study how bardoxolone methyl affects the chronic inflammation and decline in kidney function that are key features of Alport Syndrome.
Regulus Therapeutics is pleased to announce the initiation of the HERA study, an interventional clinical study in Alport syndrome patients. The purpose of this research study is to evaluate the safety and effectiveness of an investigational drug (an anti-microRNA 21 called RG-012) compared to placebo as a treatment for patients with Alport syndrome.
Over the past nine years, ASF has successfully created a landscape that encourages industry, academia and the government to invest in studying Alport Syndrome. The result can be seen in the increased number of potential therapies “in the pipeline” to treat Alport Syndrome.
ASF is taking steps to better incorporate the patient perspective into our research goals. To better understand the daily and long-term impact that Alport Syndrome has on patients and the main concerns patients have about the disease and its progression, we have created a survey.
Registries are an important part of moving research in Alport syndrome forward. Dr. Michelle Rheault, the Co‐Director of the University of Minnesota’s Alport Syndrome Treatment and Outcomes Registry (ASTOR) explains how registries work and why you should consider enrolling.
For most Alport Syndrome patients and families, a discussion of the genes that carry this disease are the starting place for understanding the way the disease is inherited. However, just a few short decades ago, how the disease was inherited was unknown to the medical and patient communities.