Health Magazine

The Superficial Siderosis Patient Registry

Posted on the 10 June 2018 by Livingwithss @livingwithSS
  Your Superficial Siderosis community advocates, the Living With Superficial Siderosis website and The Silent Bleed -Your Superficial Siderosis Charity have joined together in a grassroots effort to support the launch of a patient-powered registry. You are being asked to take part. Before you agree to join this volunteer effort it is important that you understand what this registry is about and what will be done with the information that you provide.  The disadvantages we fight include the geographic distance between our community members and finding interested researchers or healthcare industry partners. Superficial Siderosis patient member groups on social media have been our primary means of communication. Recent Facebook group discussions led to the realization our patient community needed a patient registry accessible through a web-based platform. After some consideration it seemed the most cost effective way to a Superficial Siderosis patient registry was to build the first one ourselves. This website takes advantage of internet security protocol, registration requirements, and member restricted login for access to profile and survey areas. Our personal information will be stored the same as yours. No information will ever be offered for sale. No identifying information will ever be disclosed without your express consent.  There are three registration…

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