The information presented on this web site is provided for information purposes only. This information does not constitute medical advice and it should not be relied upon as such. The Alagille Syndrome Alliance does not engage in the practice of medicine. Under no circumstances, does the Alagille SyndromeAlliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuingany course of treatment.
We are doing a research study to help us understand how children who are born with heart problems do as they grow older. In particular, we want tounderstand if genetic differences lead to different health outcomes in children who have the same type of heart problem. We hope that our study will help us improve upon their clinical care and provide better counseling to families.
NOTE: The study is only for children between the ages of 8-18 with TOF, IAA and Truncus arteriosus.
Help Us Find the Key to Your Heart
What will you be asked to do?
Participants will have an echocardiogram, exercise stress testand cardiac MRI at The Children's Hospital of Philadelphia.
We will also review the child's medical history and have thechild and one parent fill out questionnaires.
Results of these cardiac tests will be sent to your cardiologist.
We will cover the costs of tests and reimburse travel expenses.
Interested in learning more? Willing to help?
Please contact:Study Coordinator: Tina Hayden Rush, R.N. @ 267-426- 0268
Principal Investigator:Elizabeth Goldmuntz, M.D. @ 215-590-5820
We're gathering information on participation in the Cholestatic Liver Disease Consortium (CLiC) Patient Contact Registry and 6001: Longitudinal Study of Genetic Causes of Intrahepatic Cholestasis for which CLiC is now enrolling patients.
We know your time is limited, so our survey is short and should only take you 15-20 minutes to complete (unless you are really wordy in the open comment spaces...).
The information you provide will help us improve the effectiveness of the CLiC Patient Contact Registry and increase participation in the the CLiC Longitudinal Study. Your contribution to our research is greatly appreciated!
We are having an AGS Family Day in Cincinnati. You will be able to:
Get the scoop on the basics of AGS with AGS 101
Talk to doctors about a variety of issues including vascular, nutrition and quality of life
Socialize with other AGS families
Have a lot of FUN!
Best of all, the cost to attend AGS Family Day Cincinnati is $0. It is FREE for you to attend. Just bring your family and be prepared to have a good time!
Please take a minute to either email Beth and Richard that you are coming (their email address is listed below - include the number of adults and children attending)or download, print out and mail a registration form to Beth and Richard at:
100 Union Street
Cardington, OH 43315
Thank you!
