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 Kreiger 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 Tuebingen and is technically supported by a group in Hamburg, Germany. This project has become a model for international use.

Over several adhoc 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 have taken 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 their efforts as a Consortium, to further their work on the Consortium's member rights and responbsibilities, 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.

It is the hope of the Consortium that the agreement will be completed at their next meeing in 2008. The Consortium will then work quickly to implement the International MLD Registry so that it can be used as a valuable tool in current MLD research and clinical trials.