06 Jul Understanding Patient Registries
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.
What is a registry?
A registry is a central place to collect clinical and personal information about patients, usually patients who all have the same disease such as Alport syndrome. Registries must be approved by an Institutional Review Board to ensure that all ethical considerations are followed. You will sign a consent form prior to any of your data being collected. Each registry collects slightly different information. The ASTOR registry collects information about your age, lab results, transplant status, and family history, among others and updates it yearly.
What happens to my data?
Registry data is generally stored on a secure computer server. A number of safeguards are in place to ensure that your data is protected. Only the registry investigators and their team have access to the data.
How can being in a registry make a difference?
Registries can be used for retrospective studies, which are studies that use data that has already been collected to answer clinical questions or to learn more about the natural course of the disease. Retrospective studies can provide very important information to researchers. This type of study was performed by Dr. Oliver Gross in 2012 using the European Alport registry data to show that ACE inhibitors could slow the progression of Alport syndrome kidney disease. Registries can also be used to identify patients who are eligible for clinical trials. For example, if we wanted to do a study of boys with Alport syndrome between the ages of 5 and 18 who hadn’t received a transplant yet, we could look in our ASTOR registry and find a number of those patients that we could then invite to participate. Some clinical trials are very simple, while others are more complicated and may require travel to participate. Of course, you always have the choice to participate in a clinical trial or not.
What is the ASTOR registry?
The ASTOR registry is a registry for patients of all ages with Alport syndrome (X‐linked, autosomal recessive, or autosomal dominant) who live in the United States. It is led by Dr. Clifford Kashtan at the University of Minnesota. It started enrolling patients in 2007 and currently has 834 participants enrolled with new participants being enrolled each week. There are a number of other Alport patient registries around the world. The ASTOR registry is working with other Alport registries to coordinate data collection so that we can work together on clinical research studies.
How can I enroll in ASTOR?
Easy! Go to http://www.alportregistry.org and click on the “For patients and families” tab. There is a link to register to provide your name and address. Once we receive this, we will send you out a consent form for the study to review, sign, and return to us. Then we will set up a phone interview with you and one of our coordinators. You will be asked a number of questions about your Alport health history and family history. This information will be stored in our database. Once a year, you will receive an email with a link asking you to update key information (latest labs, transplant, etc.). You will also receive occasional newsletters about the registry and information about any new studies that are being performed. Our coordinators are happy to answer questions about the registry process at any time.