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. 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.

Please feel free to contact us at any stage


Study center

Klinik für Kinder- und Jugendmedizin Universitätsmedizin Göttingen Robert-Koch-Str. 40

37075 Göttingen Germany

Tel.: +49 (0) 551 39-80 35 (Sekretariat)

Fax: +49 (0) 551 39-662 52


Participating institutions and people


  • Dr. med. Lars Schlotawa
  • Prof. Dr. med. Jutta Gärtner


In collaboration with:

Alan Finglas, President of the Multiple Sulfatase Deficiency Action Foundation ('MSD Action Foundation'), Dublin, Ireland