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.
A proper diet is crucial to maintaining proper renal and overall health. Potassium is a very important mineral in the body that most individuals are only vaguely aware of until their renal condition declines and are told by their doctor/dietitian to limit its intake.
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.
In response to requests for more face-to-face interaction with other families affected by Alport Syndrome, ASF has hosted several Alport Family Meetings in 2016. Participants have left feeling empowered and connected to the Alport community.
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.
Later this month, Tom Denham will face his toughest challenge, the aptly named Forbidden Peak, as he continues his commitment to support ASF by climbing toward a cure on his annual charity climb in honor of his daughter, Rachel.