International WAGR Syndrome Association

11p Deletion Syndrome

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International WAGR/11p Deletion Syndrome Research Study


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         Children and adults with WAGR/11p Deletion Syndrome and their parents are invited to participate in a clinical study sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is part of the National Institutes of Health (NIH).

 


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         The purpose of the study is to learn more about how the genes involved in WAGR/11p Deletion Syndrome affect people with this condition and to identify potential treatments to improve their health.

 


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         Participation involves providing blood samples and medical records to NIH investigators, and if certain criteria are met, the option of also having an inpatient evaluation and enrollment in a medical treatment trial at the NIH Clinical Research Center in Bethesda, Maryland.

 


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         There is no cost for participating in the study. Eligible participants will be compensated for their time and transportation costs.

 


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         For more information, please contact:

 

Joan Han, MD                                                                        

WAGR Syndrome Study WAGR Syndrome            

(301) 435-7820                                                                

hanjo@mail.nih.gov                                                               

 

Amanda Huey, BA

WAGR Syndrome Study Coordinator

(301) 402-6762

WAGR_Study@mail.nih.gov

 


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NIH Enrollment Information 2011
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