Caregiver Survey: Mowat-Wilson Syndrome

The Mowat-Wilson Syndrome Foundation has partnered with suAzio to conduct a survey of Mowat-Wilson Syndrome caregivers like yourself. The survey has been developed in close collaboration with the MWSF to ensure the resulting survey feedback will assist the Foundation to better serve the MWS community.

In the survey, we ask a variety of questions on topics such as usage and attitudes about digital health applications, the most valuable features of currently used apps (if any) what features you would like to see in future apps, as well as questions about willingness to participate in discussions with pharmaceutical and healthcare companies, clinical trials and more. We have also included questions that follow-up from previous surveys to provide valuable analysis to the Foundation.

The survey itself, along with the resulting data and analysis, are provided at no cost to the MWS Foundation or any individual participant. This partnership benefits both the MWSF and suAzio by demonstrating the value of our collaboration to sponsors, scientific researchers, patient associations, and patient groups who could benefit from similar surveys.

suAzio is a professional organization with years of experience conducting surveys like this. We understand the need for privacy and have therefore ensured the survey is hosted on a secure server using encrypted data.  SuAzio is responsible for protecting your personal information. Use of your personal data will be limited to this project only, and suAzio will never share your individual information with any third party. Data and analysis will be provided to the MWSF in aggregate form, and no individual responses will be associated with any individual personal identity. Your answers are therefore confidential and your identity protected.

Use of your personal data will be limited to this project only, and suAzio will never share your individual information with any third party.

Once the survey is complete, suAzio will analyze the combined results and collaborate with the MWSF to publicise our findings. Again, no individual’s personal information will be shared.

We hope that our findings will stimulate broader interest in developing a better understanding of MWS and attract further investment in helping affected individuals and their loved ones, just like yourself.

The survey should require less than 20 minutes and your answers are very much appreciated.

If you have any questions or need assistance, please contact Alec Pettifer of suAzio consulting at: a.pettifer@suazio.com

Thank you for your participation, the MWSF and suAzio very much appreciate your time and consideration.