The idea of an international MLD patient registry is nearly as old as experimental treatments of MLD patients. It started to materialize in 2005, greatly stimulated by the late Dr. Hugo Moser of the Kennedy Krieger Institute.

A MLD patient registry was developed as part of the German government-funded Leukodystrophy Network (Leukonet). This German project is headed by a group in Tübingen and is technically supported by a group in Hamburg, Germany. This project has become a model for international use.

Over several ad hoc meetings, a working group of specifically interested persons has gained shape. Interested groups are MLD families, physicians, scientists, and developers of new treatment modalities.

Meetings dealing with establishing an international MLD registry took place in Washington DC and in London in 2005, in Durham & DeKalb in July 2006, in Cambridge, Massachusetts in June 2007, in DeKalb, Illinois, and in Mannheim, Germany, in July 2007.

The working group met September 2007 in Hamburg, Germany to formalize and sign the Consortium Mission Statement, to further their work on the Consortium's member rights and responsibilities, to discuss the quality standards for data entry, and to further develop the procedures for accessing and using the Registry's contents.

Detailed discussions of the Consortium's formal agreement occurred at an international meeting hosted by the MLD Foundation in Boston during late October 2007.

The signing of the final Consortium Operating Agreement occurred in July 2008 in DeKalb, IL. The Consortium is now working quickly to implement the International MLD Registry so that it can be used as a valuable tool in current MLD research and clinical trials.