Disease registries are large, often multi-national observational databases that collect clinical data on patients with a particular disease. By collecting, analyzing, and disseminating data on disease progression and patient responses to long-term disease management strategies, registries help improve disease understanding and keep medical professionals up-to-date on the latest advances.

Disease surveys, research associations and consortiums, and gene databases conduct ongoing research and data collection to enhance disease knowledge and support reseach projects.

The following registries and disease research websites are some of the available resources about lysosomal storage disorders:

Batten Disease Support & Research Association

European Alpha Mannosidosis Research Consortium

Gaucher Registry (Genzyme)

Fabry Registry (Genzyme)

Fabry Outcome Survey (Transkaryotic Therapies)

MPSI Registry (Genzyme)

Neuronal Ceroid Lipofuscinoses Mutations Database

Pompe Registry (Genzyme)

Registry for Mucopolysaccharide and Related Diseases (MPS Society)

Lysosomal Disease Network

If you know of a LSD-related research program that should be added to this list, please send us an email.

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