Registry & Research

The 4p- Support Group has been collecting and organizing biographical data on individuals with 4p- (Wolf-Hirschhorn Syndrome being the main syndrome) for over 20 years.  Currently, our organization is building an International Registry.  Completion and implementation of the registry is expected by Fall 2014.

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 the individual with 4p- has passed away.  International participation is greatly appreciated.

 

For those currently participating 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. (Participation is now closed.)

Growth Research Consent Forms-

4p- child age 17 and under

4p- adult age 18 and over


If you have any questions or concerns about our 4p- patient registry and/or participating in research please contact Amanda Lortz at amanda@4p-supportgroup.org.

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