The Swiss Pompe Registry is a strictly observational and anonymous electronic registry of Swiss patients suffering from late onset Pompe disease. The registry was a condition of the reimbursement agreement with the Federal office of Health (FoH) for compulsory reimbursement for Myozyme in late onset Pompe disease. http://bag.e-mediat.net/SL2007.Web.External/
It was designed and introduced in November 2011 in close collaboration with the Swiss experts in Pompe disease as well as the Federal office of Health (FoH). The development and operation are funded by Genzyme - Sanofi Genzyme. http:/www.sanofigenzyme.ch
The Swiss Pompe experts and Swiss Federal Office of Health (FoH) have designed the registry to manage and standardize patient care and clinical monitoring for late onset Pompe disease based on international treatment guidelines. This includes defined parameters and time periods between two assessments. The content of the Swiss Pompe Registry is managed according to current disease knowledge and may change in light of new insights. The collected data is used to check the effect of enzyme replacement therapy among patients.
A written consent from the patient or his/her legal guardian to perform the necessary periodic assessments and to register and archive the data compiled as a result of the treatment in the Swiss Pompe Register is mandatory.
For more information about the Swiss Pompe Registry please contact Sanofi Genzyme in Baar.