|
Two Fabry Surveys and Questionnaires |
The Fabry Association would like to ask you to complete two questionnaires about your experience with Fabry disease. These two independent and separate surveys are being sent to Fabry patients in Canada and both are supported and endorsed by the Canadian Fabry Association. As there are not many Fabry patients in Canada, your response is very important and we encourage you to take a few moments to answer the questions and return the surveys online via the internet websites provided. All information remains confidential and does not even require your name or address. Hopefully you will be able to complete the surveys by December 31, 2007.
In both cases, the surveys should be completed by the person with Fabry disease unless the person is under 18 years of age. In that case, the surveys should be completed from the perspective of the child but with the assistance and oversight of a parent or guardian.
If more than one person in your household has Fabry, a separate survey should be completed by each. If you consider yourself a ‘carrier’ and have no symptoms, you should also complete the surveys as you are a Fabry patient.
As the CFA does not know all of the Fabry patients in Canada, please forward this email to other family members who have Fabry so they can also participate.
The first questionnaire is part of a worldwide survey. Shugoll Research is a firm that has been selected to collect and analyze the information from Fabry patients in four countries one of which is Canada. The survey is available online and can be accessed at:
http://surveys.surveynetwork.com/Fabry_Survey/main.php
The French translation can be found at:
http://surveys.surveynetwork.com/fabryfrench/main.php
The second survey, from the Canadian Organization for Rare Disorders (CORD) and the Canadian Fabry Association, is to collect and analyze information about lysosomal storage disorders such as Fabry, Gaucher, MPS, Pompe etc. in Canada. The current plan is to present this data at the Lysosomal Storage Disorder world wide conference to be held in the USA next February 2008. Link to complete this survey on line is at:
http://surveymonkey.com/s.aspx?sm=sNpG8RhJ3YC2P0oBDOL7IA_3d_3d
Thank you for taking the time to complete and return these two very important questionnaires. If you have any questions, please let the CFA know.
|
