Monitoring Fabry disease

Physicians should determine the actual frequency of necessary assessments according to a patient's individualized need for medical care and routine follow-up at the site/practice.

A minimum recommended schedule of assessments has been developed by the Fabry Registry. The schedule represents core assessments to optimally monitor progression over the life-long course of the disease and obtain long-term clinical status information for patients using any disease support and/or treatment measures. Please click here for more information about the Fabry Registry.

These recommendations can help to facilitate consistent and thorough clinical evaluations. These clinical evaluations may reveal changes in a patient's clinical status and provide information for a database to fulfill the scientific objectives of the Fabry Registry.

Click here to go to the Fabry community website. Under the title ‘Role of participating physicians’, you can find a PDF of the minimum recommended schedule of assessments for patients under 18 years of age and the minimum recommended schedule of assessments for patients18 years of age and over.