We want you to know about an opportunity to participate in a research study. Our group is collaborating with Drs. Amy Calhoun and John Carey at the University of Utah, co-chairs of our Scientific Advisory Board.
As you know, most people with 4p- have significant growth problems. Therefore, the usefulness of standard growth charts for people with 4p- is limited. Plotting growth points on an appropriate growth chart is a key piece of well-child care, but using typical charts for patients with 4p- may fail to alert his or her care provider to a growth-related health problem, such as a hormone deficiency. Specific growth charts for people with other genetic syndromes, such as Down syndrome and achondroplasia have proven helpful to their care providers.
The purpose of our study is to collect growth data from persons with 4p-/Wolf-Hirshhorn syndrome in order to construct growth charts specific for 4p- / Wolf-Hirschhorn. All data from our members is extremely useful, even if the child or adult with 4p- has passed away.
As a member of the 4p- Support Group, we felt you might be interested in participating in this approved study. Participation information on this study can be found on our website www.4p-supportgroup.org, including the consent documentation and instructions for submitting the growth data if you are interested. Requesting information on the study or agreeing to be contacted about the study does not enroll you in the study.
Below is a presentation given by Drs. Carey and Calhoun during the 2010 4p- National Conference discussing the growth research project and answering questions from parents. *We apologize for the background noise. We always allow our parents to bring their children into the presentations during our conferences.
Learn more and enroll in the growth research.
Learn more and enroll in the growth research.