The 4p- Support Group has been collecting and organizing biographical data on individuals with 4p- (Wolf-Hirschhorn Syndrome being the main syndrome) for almost 20 years. This information is transferred to our Bio CD and is updated annually. Additionally, our organization is in beginning stages of building an International Registry. We encourage all parents who have children with 4p- to submit biographical information to us every 2 years.
Currently, the 4p- Support Group is participating in 2 projects to advance the medical community’s knowledge of 4p- and Wolf-Hirschhorn Syndrome. By submitting your child’s biographical information, you will be helping advance this knowledge. This is called a general data collection and your child will not be named in the research. However, once we receive your submitted form, we will mail you a consent form to be signed and returned to our Corporate Office. This simply allows us to share this information with our researchers – Dr. John C. Carey, Dr. Amy Calhoun, Dr. Sarah South, and their colleagues.
To submit and/or update your child’s biographical file, open the link below and follow the instructions. This information will be released only to members of the 4p- Support Group, and no other use is authorized without your expressed permission.
