In
cooperation with the IPA, International Pompe Association, Erasmus
University Medical Center Rotterdam, the Netherlands has developed a
questionnaire for patients with late onset Pompe’s disease. The questionnaire
was developed in order to gather information about the course of the disease in
juvenile and adult patients.
The
questionnaires will be distributed in the US by the AMDA in cooperation with
Erasmus University and the IPA. An invitation to participate in this
study will go out to late onset patients in November 2002. Participation
in the study is totally voluntary and will have no affect (positive or negative)
on a patient's participation in a clinical trial for enzyme replacement
therapy. Patient identity will remain confidential.
If you wish to receive more information on the questionnaire project, please contact Marylyn House, AMDA at tianrama@aol.com or Ms. M. Hagemans, MSc, at m.hagemans@azr.nl
© AMDA, Acid Maltase Deficiency Association, Inc. 1997
