The Alport Syndrome Foundation is hosting several family meetings in the coming months. Please visit the following link for dates and locations: http://alportsyndrome.org/connect/family-meetings/.
We have started the process of updating ASTOR data. Over the next several weeks participants will recieve an email with instructions on how to create an account and update the data provided at the time of enrollment.
On September 19, 2014 the University of Minnesota launched a new study “A Natural History Study to Observe Disease Progression, Standard of Care and Investigate Biomarkers in Alport Syndrome Patients” also known as the “Athena Study” (http://www.alportstudy.com).
This study is funded by Regulus Therapeutics, San Diego, CA, and is being conducted by Dr. Michelle Rheault and Dr. Clifford Kashtan both at the University of Minnesota and other centers in the US and around the world.
The purpose of this study is to collect data to characterize or measure the progress of kidney disease in Alport syndrome patients over the course of 6 to 24 months. We hope to establish the rate of change of certain renal biomarkers in subjects whose renal function is steadily declining. No treatment for Alport syndrome will be provided in this study and you may remain on any medications prescribed by your physician.
If you are interested in participating in this study or wish to have your child participate in this study you should meet the following inclusion criteria:
· 16 years of age or older
· have a confirmed diagnosis of Alport syndrome (by skin or kidney biopsy and through genetic testing
· a documented glomerular filtration rate (GFR) of 30-75 ml/min, either estimated by MDRD or measured through iohexol GFR within the past 6 months. If you don’t know your GFR, either your local nephrologist or the study coordinator can help you to determine this
· serum creatinine obtained within the last six months
be able to understand and comply with the requirements of the study and able to provide written consent (subjects age 16 or 17 must be able to provide assent)
For more information about the study you can contact Kristi Rosenthal at 612 624 6135.
See Dr. Kashtan's video: "Familial Hematuria - A Never Ending Story" on our website or click here: http://www.youtube.com/watch?v=VosTopo0JiQ&feature=youtu.be.
We have completed data collection for the National Institute of Diabetes and Digestive and Kidney Diseases R21 Feasibility study. Data was submitted by 5 international sites.
Dr. Kashtan taked about Alport Syndrome on ABC News:
Dr. Kashtan attended "Shining a light on Alport Syndrome" An International Workshop on Alport Syndrome. This was an exciting international event designed by Alport syndrome individuals and families in partnership with the leading international experts to collaborate on ideas for the future - Oxford, United Kingdom: http://www.nature.com.ezp1.lib.umn.edu/ki/journal/vaop/ncurrent/full/ki2014229a.html.
Dr. Kashtan spoke at the American Society of Nephrology Conference in Atlanta, GA in November 2013. The topic of his presentation was Alport Syndrome: A Role for Early Identification and Treatment.
Enrollment is underway at 5 participating sites for the National Institutes of Health National Diabetes and Digestive and Kidney Diseases Feasibility study to demonstrate that ASTOR can identify sufficient numbers of males and females with Alport syndrome to participate in clinical trials. The five sites are listed below.
Dr. Kashtan will be attending the International Pediatric Nephrology Association Congress in Shangri China. The conference will be attended by physicians, researchers and families from around the globe. An Alport Syndrome Workshop will be conducted during the conference. The workshop is being sponsored by the Alport Syndrome Foundation.
Enrollment into the Urinary Biomarkers of the Progression of Alport Kidney Disease study is closed. We recruited 80 participants. Study summaries will be posted on this website in October 2013. A description of the study is listed below.
July 21st and 22nd: Family Conference 2012
The Alport Syndrome Foundation and the Alport Syndrome Treatments and Outcomes Registry (ASTOR) invite you to our Family Focused Conference. The conference will be held at the University of Minnesota, Twin Cities Campus, Minneapolis, Minnesota on July 21 and 22, 2012. All the information you need is available here: Family Conference.
May: Clinical Practice Guidelines 2012
The Alport Syndrome Research Collaborative developed Clinical Practice Guidelines. A statement about the guidelines appears in the April edition of the Journal of Pediatric Nephrology.
ASTOR was awarded a National Institutes of Health National Diabetes and Digestive and Kidney Diseases grant to demonstrate that ASTOR can identify sufficient numbers of males and females with Alport syndrome to participate in clinical trials. Five sites will participate in the study:
- United States: Alport Syndrome Treatments and Outcomes Registry (ASTOR), a collaborative effort of the University of Minnesota and the University of Utah
- Canada: University of Toronto and the Hospital for Sick Children
- China: Peking University First Hospital
- France: Centre de Référence des Maladies Rénales Héréditaires de l'Enfant et d l'Adulte (MARHEA), located at the Clinique Maurice Lamy Hopital Necker-Enfants Malades, Paris
- Germany: European Alport Registry, located at University of Göttingen
- ASTOR received support from the Kenneth and Claudia Family Foundation to study early markers of renal disease progression that can serve as surrogates for hard endpoints like end-stage renal disease, decreased glomerular filtration rate or biopsy-proven fibrosis.
- ASTOR formed research collaboration with the Novartis Institutes for BioMedical Research to develop urinary biomarker assays specific for Alport Syndrome glomerular disease. These biomarkers will be necessary to predict progressive renal disease and to gauge response to investigational compounds in future clinical trials of investigational compounds.
In order to assess the probability that Alport families will participate in placebo controlled clinical trials, two online surveys were posted on the ASTOR website in August 2010. As of this reporting (Jan 27, 2011), 101 individuals have responded to Survey #1 and 114 individuals have responded to Survey #2. To view a complete summary of the survey results please click here
The Alport Syndrome Symposium held in New York on Saturday, August 28th was a huge success! With almost 500 attendees, including 200 family members, it was the largest event concentrating on Alport syndrome that has ever been held.
Please visit the Alport Syndrome Foundation website to view 10 of the panel presentations: http://www.alportsyndrome.org/about-alport-syndrome/announcements/symposium-presentations.
March 28, 2010
"National Registry is a Tool in the Figth Against Cystic Fibrosis": New York Times Article