Take the 4p-/Wolf-Hirschhorn Syndrome Patient Survey! Research is key.
The 4p- Support Group is thrilled to announce the updated 4p-/Wolf-Hirschhorn syndrome survey created in partnership with the Coordination of Rare Diseases at Sanford (CoRDS), an international registry program for individuals with a rare disease.
This is another milestone for the 4p- Support Group! It builds upon basic patient registry information, such as contact and demographic data. Questions in the survey range from diagnosis to genetics to history of seizures and beyond. Parents and legal guardians of those with 4p-/Wolf-Hirschhorn syndrome (WHS) are encouraged to participate. The data collected will empower patients, families, clinicians and researchers with more accurate information about 4p-/WHS and, hopefully, lead to improved care.
Click here to enroll in the registry today! Completing it will take approximately 15 minutes. If you have trouble completing the registry in one sitting, you can save your responses and return to finish it later. Please use a laptop and take your time. We ask that you have a copy of the participant’s genetic report so that you can enter their results.
Be sure to select “4p- Support Group” when asked where general data can be shared. That way, we can share the findings with you through our community. With enough responses, there may also be an opportunity for the 4p- Support Group to apply for grant funding to conduct further research on 4p-/WHS!
If you already signed up with CoRDS and took the original survey, simply log in to your portal and review your previously entered information. Then you will automatically be directed to the updated survey.
Please use a laptop or a computer to take the survey, for best results. For general questions about the survey, email amanda@4p-supportgroup.org. For technical questions or help using the online portal, contact CoRDS at 1-877-658-9192 or cords@sanfordhealth.org. If you are having difficulty registering, please email CoRDS directly to receive a survey that can be mailed or emailed back to CoRDS.
4p- Support Group
Amanda Lortz – Executive Director, Susan Bear – President
Special thanks to Amanda Lortz. This survey is due to her dedication to improving lives for those with 4p-/Wolf-Hirschhorn syndrome as a patient advocate and board member of the 4p- Support Group.
Additional thanks to geneticists and Chairs of the 4p- Scientific Advisory Board, John C Carey, M.D., PhD and Amy R.U.L. Calhoun, M.D., for their assistance with this registry and support of the 4p- Support Group.