The MSK Online Project started in August of 2012 with some on line surveys that we designed to collect information about the symptoms many of us share. Later, we established an MSK support group on Facebook where Medullary Sponge Kidney patients have found support, encouragement and the ability to learn by comparing information. In December of 2012, we contacted Prof. Giovanni Gambaro, one of the world’s very few MSK researchers and explained our on line community of symptomatic MSK patients. After reviewing the results of Phase II of the MSK Online Project, Prof. Gambaro kindly and generously took on our cause. For the purpose of this new on line research, Prof. Gambaro has establishing the Medullary Sponge Kidney Network, a website specifically for an on-line scientific project to obtain insights on this disease from the patients’ perspective. Encrypted on line surveys and protocols have been set up and the first surveys are now complete and being analyzed. Results will be presented to an international conference later in 2015. We anticipate more research with professor Gambaro in the future. If you are a symptomatic MSK patient who suffers pain and fatigue and would like to participate in future research, you can receive updates by liking us on Facebook.
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