NN&I - August 2010

Subscribe to our free eNewsletter at www.nephronline.comAugust 2010 Nephrology News & Issues 41 Recruitment A symposium about issues surrounding Alport Syndrome aimed specifically at physicians, researchers, and familiy members of Alport Syndrome patients is being held Aug. 28 in New York.The symposium, which is being co-sponsored by the Alport Syndrome Foundation and the University of Minnesota's Alport Syndrome Treatments and Outcomes Registry (ASTOR), is the first of its kind dedicated to Alport Syndrome and the families affected by it in more than a decade.The goals and objectives of the symposium are to: bring together an international group of Alport Syndrome \037 researchers with affected patients and families. provide clinician-scientists, basic researchers, pediatric \037 nephrologists, and families with the most recent informa-tion on the genetics, clinical features, pathogenesis, diag-nosis and treatment of Alport Syndrome and the direction of future research. attract junior investigators and trainees to Alport \037 Syndrome research. build collaborations among patients and families, clini-\037 cians, researchers, and the medical community that will translate to increased recruitment for clinical trials. educate and empower patients and families by allow-\037 ing interaction with many of the foremost clinician-scien-tists and basic investigators involved in Alport Syndrome research.The symposium will provide a forum for establishing the necessary international collaboration among researchers and families, will promote the sharing of insights result-ing from basic and clinical research, and offer an oppor-tunity for interested constituents to discuss diagnosis and treatment issues and to begin to identify future research directions. It will also offer a unique opportunity for physi-cians and researchers to share current and yet unpublished information on the genetics, clinical features, pathogenesis, diagnosis, and treatment of Alport Syndrome. Additionally, the symposium will serve as a forum to attract junior inves-tigators and trainees to the field and allow families direct interaction with investigators working to develop effective therapies for Alport Syndrome. Billy Hudson, MD, of Vanderbilt University and Clifford Kashtan, MD, of the University of Minnesota will moderate the one-day symposium. The symposium is organized into ten, 30-minute sessions with morning and afternoon ques-tion and answer periods, and concludes with a moderated open discussion. Alport Syndrome, which arises from mutations in genes that code for type IV collagen proteins, is an important inherited cause of kidney failure in children, adolescents, and young adults. Alport Syndrome affects at least 1 in 5,000 individuals and is a major cause of genetic kidney fail-ure. Males with the predominant, X-linked form of Alport Syndrome have a 50% probability of developing end-stage renal disease by age 25. The probability is virtually 100% by age 40 years. The risk of ESRD in women with X-linked Alport Syndrome is also significant: 15% by age 45, 30% by age 60, and 40% by age 80. Alport Syndrome also occurs as an autosomal recessive and autosomal dominant disor-der, associated with development of ESRD by age 30 in the majority of affected males and females. There is currently no effective treatment for Alport Syndrome in people, despite numerous studies in animal models that have identified a variety of potentially benefi-cial interventions, including angiotensin antagonism, anti-TGF \3371 antibody, inhibition of matrix metalloproteinases, vasopeptidase A inhibition, chemokine receptor 1 blockade, HMG-CoA reductase inhibition, bone morphogenic pro-tein-7, irradiation, and stem cell transplantation. None of these potential therapies has been tested in clinical trials in Alport Syndrome patients. Pediatric association includes program on Alport SyndromeBy Sharon Lagas Ms. Lagas is president of the Alport Syndrome Foundation. The ConferenceAlport Syndrome: A symposium for physicians, researchers, and families Part of the 15th Congress of the International Pediatric Nephrology Association (IPNA)August 28 New York Hilton, New York Free For more information, or to register, visit www.alportsyndrome.org. Conference Prev_NNI0810_3.indd 41 7/20/10 2:00:48 PM