CDHi is currently working on a research study with the University of Toronto Sick Kids Hospital on the long-term effects of Congenital Diaphragmatic Hernia and requests that all survivors over 13-years-old participate in this important work.
It is also equally important that all patients who are over 1 year of age or who are deceased are counted in the CDH Patient Registry.
All research data is 100% confidential, never shared or sold and fully HIPAA compliant.
If you have any questions, please reach out to us at firstname.lastname@example.org
To all CDH Survivors 13 Years and Older:
Dear CDH Survivor:
Sick Kids Hospital at the University of Toronto and CDH International request your participation in a research study on the long-term affects of Congenital Diaphragmatic Hernia.
Participation involves just 10 minutes to fill out a one page survey on any long term issues that you may have endured.
This data will help identify connections to Congenital Diaphragmatic Hernia and help prepare younger generations of CDH survivors of possible complications.
Your participation is voluntary, completely confidential and CDH International will not share your name or contact information with the University. Your data will be de-identified and fully HIPAA compliant.
To participate, simply log into the forums at http://www.cdhboards.org If you do not remember your login (or your parent’s login) or password, you can reset through this e-mail address or you can contact us for help at email@example.com
Once you are logged in, go to https://cdhboards.org/survey/17 to fill out the questions specific for this study.
It would also be very much appreciated if you will answer all the questions in the patient registry by starting at https://cdhboards.org/survey/1 as this data is not only also likely to be used in this particular joint study, but also other research collaborations.
If you have any questions or concerns, please do not hesitate to reach out.
We appreciate your participation in this very important research that will benefit all survivors of Congenital Diaphragmatic Hernia.
Dawn Torrence Ireland
President, CDH International