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. All data is extremely useful, even if your child or adult with 4p- has passed away. International participation is greatly appreciated. The only requirement is that submissions must be sent to us in English.
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.
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.
To participate in the 4p- growth research project please include the applicable consent form with the submission of your child’s biographical form. Instructions are included on the biographical form.
Growth Research Consent Forms-
If you have any questions or concerns about submitting your child’s biographical form and/or participating in the growth research please contact Amanda Lortz at firstname.lastname@example.org.