Rare Disease Report

The Fabry MOPPet Study

APRIL 15, 2017
Dawn Laney

Dawn Laney, MS, GCG, CCGC at Emory University Department of Human Genetics in Atlanta, GA talks about the MOPPet study which is following children diagnosed with Fabry disease via new born screening and collecting patient/caregiver data over the next 4 years.
She is currently enrolling interested babies diagnosed with Fabry disease before 3 years of age and their qualifying family members in study called “A Prospective, Multicenter Pilot Study Of Fabry Disease Clinical and Biochemical Findings in Young Pediatric Patients Study” or MOPPet.  
This study involves urine collection, physical exam, and two questionnaires investigating the impact of living with Fabry disease as babies and young children over the course of four years. The study can be done at regular doctor visits and the questionnaire can be completed electronically, on the phone verbally, or on paper via email/ regular mail.
You do not have to travel to Emory to participate in the study.  
A $25 stipend is provided for each enrolled individual at each visit.
If you are interested in participating or would like more information please contact Dawn Laney via phone (404-778-8518) or email (dawn.laney@emory.edu).

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