The CARE Study (Congenital Anomalies Research Exploration)

NEW RECRUITS URGENTLY NEEDED
As the annual grant for this important study is contingent upon obtaining 200 new families a year, we would be very grateful if you could please participate if you haven’t already.

GOALS OF THE RESEARCH
We are assured that no secondary/additional findings are reported. The study team consists of GI surgeons, general GI physicians and geneticists. There is no cost to participate and families can be consented for it remotely.

The main goals are:

1. Document the underlying genetic causes of OA/TOF and to see how the genetic information correlates with medical care, overall health and development of these children long term. From this the research team will develop better treatment modalities for children with OA/TOF.

2. In addition, the research team wishes to discover novel developmental and clinical genes associated with OA/TOF. This research study is free to participate and involves obtaining either blood or saliva sample from your TOF/OA child and (ideally) both biological parents to do a type of genetic testing called whole exome sequencing. This test looks for genetic changes that could explain the reason for the OA/TOF in your family.

HOW TO TAKE PART
In the first instance please email the studies research co-ordinator, Lauren Flynn at CAREstudy@childrens.harvard.edu. Enrolled families can be conveniently consented over the telephone, and kits posted to your home to enable you to give your sample for genetic testing.

MORE INFORMATION
If you have any questions please contact Lauren Flynn CAREstudy@childrens.harvard.edu

Study Co-ordinator:
Lauren Flynn
Research Co-ordinator
Chung Lab
Boston Children’s Hospital