The MSD Patient Registry is a dedicated registry for the collection of patients with Multiple Sulfatase Deficiency and their different symptoms, forms and characteristics. It will help in gaining more knowledge of the condition, initiating research and developing therapies for MSD. The registry is run by parents of MSD patients on a voluntary basis. This registry is a necessity to help expedite research on MSD. With a good quality MSD Patient Registry we anticipate that it may lead to positive clinical outcomes and quality of life for patients suffering from MSD and their families. This is the first and only dedicated MSD patient registry in the world.
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