IPA/Erasmus MC Pompe Survey
The IPA/Erasmus MC Pompe Survey (’the Pompe Survey’) collects information on the effects of Pompe disease on patients’ lives, and how these may change with treatment. Patients themselves provide this information through an annual questionnaire. Launched in 2002, the Pompe Survey is a collaboration of the International Pompe Association (IPA) and Erasmus MC.
Why do we need the Pompe Survey?
The information collected in the Pompe Survey helps us to better understand what happens to patients over time. How does the disease progress and how does treatment affect this? Each year, patients report on physical problems they may experience, their quality of life, social participation, and the treatment they receive. This information is key to studying the effects of treatment on patients’ lives and to assess the effectiveness of new treatments on the market. Lastly, the information helps to inform physicians about the (changing) needs of patients.
Please click on the link below for more background information about the worldwide participation in the Pompe Survey.
Participating in the Pompe Survey
All individuals aged 16 and above with a confirmed diagnosis of late-onset Pompe disease may participate in the Pompe Survey. If you want to participate and want to know more about the Pompe Survey, please click on the below link.
