On Friday, April 29, join us at the Topeka, Indiana Livestock Auction Barn for The Community Health Clinic’s Annual Tri-County Benefit Auction & Supper, starting at 4:30 pm.
Pilot Study on Newborn Screening Education within Plain Community
In October 2021, The Community Health Clinic (CHC) partnered with Expecting Health to conduct a pilot study on newborn screening education within the Plain community. The goal of the study was to educate the Plain community on the importance of newborn screening while in the prenatal stage. Most newborn screening education materials are online or digital.
The CHC and local midwives who deliver in homes and at the local birthing centers were given the materials to give to their patients during a prenatal visit. The midwives presented the printed book at a prenatal visit, along with a pre- and post-test with basic questions about newborn screening for the mothers to complete before and after they read the newborn screening booklet. The paper pre- and post-test materials were then mailed back to the clinic. The pilot was set for three months, October 2021 through January 2021. We had 27 mothers who completed and returned the tests.
The preliminary results show that learning increased from 66.7% of the newborn screening questions correct on the pretest to 98.5% post-test. The success of the pilot and the mothers’ learning about the importance of newborn screening before the baby is born has now given CHC a new goal of providing the booklet to the midwives for daily practice. The midwives or birthing centers that are able to present the expecting mothers with the booklet at prenatal visits opens up communication around the importance of newborn screening and what to expect if your baby were to have an out-of-range result.
Many families only know the newborn screening as “the PKU test” and don’t really understand what the testing is and that it is important to do all three pieces of the newborn screening. By collaborating with local midwives, we are able to help educate the community and provide alternate methods of communicating the information in a digitally driven society.
Thank you to all the midwives and mothers that participated in this pilot. Your participation will improve access to newborn screening materials and education for the community.
Jody Werker, RN, Newborn Screening Coordinator, Community Health Clinic
Marianna Raia, MS, CGC Associate Director of Programs at Expecting Health
Community Health Clinic’s Fall 2021 Newsletter
The latest Community Health Clinic Newsletter is here! Get updates about what we have been doing, read a family story, and more!
10th Annual Dutch Dinner to be Held November 6
The Community Health Clinic is hosting its 10th Annual Dutch Dinner on Saturday, November 6, at the Sammlung Platz Event Center in Nappanee, Indiana.
The annual Dutch Dinner began ten years ago to build awareness about the Community Health Clinic and raise support for its mission.
Indiana Adds X-ALD to Newborn Screening
Starting July 1st, Indiana began screening for X-linked adrenoleukodystrophy (X-ALD) via newborn screening.
X-ALD occurs when certain fats (very long chain fatty acids or VLCFAs) cannot be broken down in the body. These fats build up and affect how the body normally functions. This disease largely affects the nervous system and adrenal glands.
Community Health Clinic Staff Publishes Mini Talk Videos
Want to know more about genetic disorders or the work that the Community Health Clinic does? The Community Health Clinic staff has published a series of educational and inspiring videos called “Mini Talks” that are available to watch on their website or YouTube channel.
Community Health Clinic’s Winter 2021 Newsletter
The latest Community Health Clinic Newsletter is here! Get updates about what we have been doing, read student testimonials, find out about changes to Newborn Screening, and more!
COVID-19 Updates and Resources
GM3 Synthase Deficiency Publication
Dr. Ammous recently published research on GM3 Synthase Deficiency. She participated in work groups studying GM3 synthase deficiency and the Amish variant of propionic acidemia.
Part of the Community Health Clinic’s mission is to promote participation in research to advance medical knowledge and improve care. Our medical care for patients with these genetic conditions has a far-reaching effect for the entire medical community and human population. Through our research, we gain insights that apply to genomic medical practice as a whole. Check out some of our other research projects.
Conferences in light of COVID-19
In light of the COVID-19 pandemic, many conferences have been canceled, put on hold, or moved to a virtual format. The Community Health Clinic staff is taking full advantage of the online presentations and courses to increase their knowledge and provide more comprehensive, compassionate care.
Newborn Screening Update
Three new genetic conditions will be added to the Indiana newborn screening panel on July 1st: Pompe Disease, Krabbe disease, and Hurler syndrome/mucopolysaccharidosis type 1 (MPS 1).