For Immediate Release
Contact: Beth Pulsifer-Anderson (PAGER)
More Genetic Research Needed for Pediatric GERD
Washington, DC – October 7, 2004 – The Pediatric/Adolescent Gastroeophageal Reflux Association (PAGER) agrees that recent genetic studies can revolutionize the treatment of GERD in the very near future. However, more families with at least two children affected with GERD are needed to participate in an ongoing research study at the Center for Genomic Sciences at Allegheny Singer Research Institute.
In a recent survey, The Children’s Digestive Health and Nutrition Foundation (CDHNF) obtained support for a theory originally presented by PAGER in 1993. Details of the survey “clearly showed that while the genetic relationship of these diseases is still being studied, it is necessary for physicians to be more cognizant of family history when diagnosing patients with GERD.” (PR Newswire 9/30/04)
PAGER Director Beth Pulsifer-Anderson further explained that, “In the 1990s Gastroesophageal reflux (GER) was not regarded as a hereditary disease. In 2000, the first gene mapping study for GERD was conducted through a collaboration between PAGER and the Center for Genomic Sciences which demonstrated a gene for severe pediatric acid reflux exists on Chromosome 13. We are still working to identify the exact gene and families can help us do this.
“The genetic research is important because it will help us understand how to treat the disease itself, rather than just treating the symptoms which is what current medications do. More importantly,” Mrs. Anderson states, “This is the beginning of a paradigm shift where we start thinking of GERD as several conditions, not one. Gene mapping is the most elegant way to subdivide the disease accurately.”
“We are pleased that CDHNF’s study showed that most primary care physicians are now familiar with the concept that GERD is inherited. We ask these physicians to take this information one step further and tell their patients about the exciting opportunity for families to help researchers to learn more about the disease,” says Jan Gambino-Burns, Associate Director of PAGER Association.
Families with at least two children diagnosed with GERD may participate in ongoing studies by contacting PAGER through their web site at www.reflux.org or contacting the research team at Allegheny Singer Institute, Center for Genomic Sciences at 888-887-7729. “We encourage parents or physicians to contact us with any questions about the study and to receive a kit for collecting saliva samples which can then be returned to us by mail,” says Garth Ehrlich, PhD, director of the center. “GERD affects several million children and this study will help us understand the causes of the disease.”
PAGER is a 501(c) (3) non-profit organization that provides information and support to parents, patients and doctors about Gastroesophageal Reflux (GER).
PAGER was founded in 1992 by Beth Pulsifer-Anderson. At the time, her daughter was two years old and Mrs. Anderson had found that talking to experienced parents was very helpful when learning to position and feed her daughter properly. Parents simply knew more about the day-to-day management of GER than doctors. She also found that other hearing parents' experiences helped to assure her that she was not doing anything wrong.
In addition to establishing research partnerships, PAGER has a web site www.reflux.org that receives 100,000 visits monthly and has over 12,000 discussion messages. PAGER also has a team of 30 trained volunteers and numerous publications for parents.
In 1997, PAGER convinced a group of researchers to help them look into the genetics of GER. One of the researchers had seen a few families with inherited reflux and was excited that PAGER had enough additional families to establish a study. A research collaboration contract was established and PAGER was then able to hire a part-time staff to locate families. The initial study results were published in the Journal of the American Medical Association on July 19, 2000 and the study is partially funded by NIH.