In order to discover a cure, it is critical for physicians treating Type 2 and Type 3 Gaucher Disease to share medical data. This allows them to quickly rule out treatments that fail and adopt treatments that show signs of success.
Genzyme Corporation has established the Gaucher Registry, a longitudinal database tracking the outcomes of routine clinical practice for Gaucher patients. Since 1991, physicians from around the world — referred to as the ICGG (International Collaborative Gaucher Group) —have participated by providing clinical data pertaining to their patients. Patient information is always shared in a confidential manner.
The collection of clinical data is important. So much remains to be known about the natural history of Gaucher Disease and the predictability of its course. Since its inception, the Gaucher Registry has collected data on over 4500 Gaucher patients. This is promising news!
However, only a small percentage of the data collected relates to GD2/3, and it doesn’t include critical neurological information. It’s important that GD2/3 patients participate in the registry to provide the data vital to finding a cure.
Efforts are currently underway to gain international consensus for the appropriate diagnosis, evaluation, and monitoring of patients with the neuronopathic form of Gaucher Disease. The collection of this information from physicians is an important step in evaluating appropriate medical care and assessing outcomes.
Genzyme Corporation is working toward implementing a sub-registry for neurological data collection for Type 2 and Type 3 Gaucher patients. Interested physicians should go to www.gaucherregistry.com.