Developed with doctors, the Foundation continually conducts surveys to collect the information they need. Participation in these surveys improves our ability to educate medical professionals and others to the true nature of MdDS, and is strictly voluntary.

Information derived from surveys may be included in aggregate in future presentations to medical or scientific audiences. In this case, you will never be identified; results are coded before being reported to maintain privacy. The MdDS Foundation does not provide personal information including email addresses to anyone.

Initial Survey
This survey is designed to collect basic information needed to educate medical professionals and others. Complete this questionnaire even if you are no longer experiencing MdDS symptoms.
Take the Initial Survey

Water-related Survey
Help improve the understanding of MdDS related to cruise, boating, water-related events.
Take the water-related Survey

Geographic Survey
Help provide basic information needed to educate medical professionals and others to the true nature of MdDS.
Take the geographic Survey

Therapy Survey
Contribute to information on therapies that MdDS patients may find helpful.
Take the Therapy Survey

Past Survey Results

Initial Survey Results 2010
Medication Survey Results 2008
Symptom Survey Results 2007
Water-related Survey Results 2010
Clinical Presentation Survey Results 2007
Geographic Survey Results 2006 – MISSING

Invitae Patient Insights Network (PIN)

The MdDS Foundation is actively developing a Patient Registry or PIN with Invitae to collect consistent information to establish and provide accurate patient data to medical professionals and researchers. Collecting and storing data in one place benefits patients, researchers, and biopharmaceutical companies who are working to help find new and better treatments. LEARN MORE

Interested in Clinical Trials? CLICK HERE