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Patients and their caregivers should be informed that a registry for patients with Pompe disease has been established in order to better understand the variability and progression of Pompe disease and to continue to monitor and evaluate treatments. Patients and their caregivers are encouraged to participate and should be advised that their participation may involve long-term follow-up.

Information regarding the registry program may be found at www.pomperegistry.com or by calling 1-800-745-4447.

Last reviewed on RxList: 2/2/2009
This monograph has been modified to include the generic and brand name in many instances.