Canadian Study (On-Line)
We were honored in recruiting patients for this study. Potential patients are notified directly by
us. It will be their decision to contact the study coordinator if you are interested in participating in the study.
Opened: November 2010
Closed: March 2011
We worked with Dr. Viera Saly in 2010, a Neurologist in British Columbia, Canada on an online CADASIL Survey/Study “How Diet Effects CADASIL.” CTWHH recruited patients for this study which was endorsed by the Vancouver Island Health Authority Research Ethics Office.
This is the study result for 2011 - This is a very detailed explanation and a thank you to all who participated
This study was published in a poster form and presented at the Lisbon Stroke Meeting attended by Dr. Viera Saly May 2012.
Dr. Viera Saly MD, MSc, FRCP(C),
Neurologist, Victoria General Hospital,
1 Hospital Way, Victoria B.C.
November 27, 2010
Dear patient, We hope you will participate in a short survey about life style choices which may have an effect on CADASIL severity. You are being contacted via the CADASIL Together We Have Hope Nonprofit. As you are aware, the foundation will not release any confidential information.
The Notch 3 mutation does not completely determine the course of CADASIL. There are likely many genetic and/or environmental factors which influence each individual patient's reaction to the disease. We know that some life style habits are detrimental (smoking, untreated hypertension), but we do not know if dietary habits can alter the course. A Mediterranean diet was found to be protective against stroke and Alzheimer's
dementia and perhaps it is also protective in CADASIL.
Follow three simple steps to access the survey:
1. click on this link: http://fluidsurveys.com/s/CADASILsurvey/ (Closed March 2011)
2. answer the questions
3. click “Submit”
The goal of our survey is to examine if your diet makes a difference. The strength of this type of study is in the number of participants. The survey has 33 short, mostly yes/no questions; it is completely anonymous and takes only 5-10 minutes. Family members may answer questions on behalf of a patient. Submitting the survey indicates that you or a family member consent to participation in this study. We trust that if you chose to take the survey, your answers will be, to the best of your knowledge, accurate and sincere. Your participation in the study is entirely voluntary. You may withdraw at any time by closing the web-page.
We are not asking you to give us your name or your e-mail address. EVERYTHING IS CONFIDENTAIL. No-one will be able to determine your identity or whether you completed the questions.
We believe that your participation will improve our general knowledge about CADASIL. We plan to notify CADASIL TWHH of the results of the survey, so they my update their web page and post the results for everyone to see. We also plan to submit the results to a peer reviewed journal. The results of the study will be stored in a password protected FluidSurvey account and deleted at the end of the study.
If you have any questions regarding this project please do not hesitate to contact Dr. Viera Saly (contact information below). With questions relating to your rights as a study subject, you may call our local ethics committee: Vancouver Island Health
Authority Research Ethics Office, phone: 250-370-8620 begin_of_the_skype_highlighting 250-370-8620 FREE end_of_the_skype_highlighting.
Thank you for your help, it is much appreciated!