Program for women with Turner syndrome earns national recognition
A novel program designed to provide comprehensive care for Turner syndrome at The University of Texas Health Science Center (UTHealth) and UT Physicians is one of the first in the U.S. to be designated an adult clinic by the Turner Syndrome Global Alliance (TSGA).
The Turner Syndrome Adult Comprehensive Care Center at UT Physicians was created by two faculty members at McGovern Medical School at UTHealth: Siddharth Prakash, MD, PhD, associate professor of medical genetics and Michelle Rivera, MD, assistant professor of pediatrics. Both are co-directors of the center, which began late last year.
Turner syndrome (TS) is a chromosomal condition affecting girls and women with features, physical traits and medical conditions caused by the complete or partial absence of the second sex chromosome. TS occurs in approximately 1 of every 2,000 female live births.
“The prevalence numbers make TS seem rare, but it is actually the most common chromosomal disorder – far more common than cystic fibrosis,” Prakash said. “It is grossly underreported because 95 percent of fetuses who have TS die in utero. However, with the right care, babies who do survive can lead normal and fulfilling lives.”
Prakash recruited a team of multidisciplinary experts from UTHealth to provide necessary hormonal treatment and coordinated care at the center for TS patients who experience common side effects and medical issues, like hearing loss, autoimmune disorders, diabetes, swelling in the limbs, and heart abnormalities.
“About half of our patients come from outside the Houston area, so it’s really important for them to have all their needs addressed in a timely manner at one place,” said Prakash. “The center allows patients that flexibility to see all the specialists they need in one day without traveling to multiple sites. It also ensures that all specialists have easy access to the patient’s medical records and are working together to provide the best multi-pronged treatment.”
TSGA is the primary organization that networks TS clinics in North America and partner groups around the world to develop the guidelines for specialty clinics. TSGA has designated about 30 pediatric clinics, and is now working towards identifying adult clinics.
“It’s a major achievement for us to be one of the first adult clinics recognized by TSGA, as it helps us continue to advocate for comprehensive, multidisciplinary care for TS patients in the region and hopefully improve their outcomes. Also, the distinction will help us to connect patients with national research that is translational to clinical care right here at home. It used to be very difficult to study TS because each site would have so few patients, but now we can band together with other recognized TS sites for critical studies that otherwise wouldn’t have been feasible.”
To earn the distinction, leaders of the center had to show that it allows patients to schedule same-day visits for various specialties, hosts regular meetings to educate both the community and physicians on the latest TS developments, follows international TSGA guidelines, conducts clinical and collaborative research, and networks with advocacy groups.
“We interact closely with the Turner Syndrome Society of the United States, a national nonprofit organization headquartered in Houston. Every year in February, we team up to host a community day, where we provide free screenings and give presentations to keep the community informed about TS. We also partner with Leaping Butterfly Ministry, a non-profit that sponsors hearing aids for girls and women with TS,” Prakash said.
In the letter notifying UTHealth of the designation, Kelly Ranallo, TSGA founder and president wrote:
“A clinic model for care of adult women with TS is a new and growing idea, and the early development of your program positions you as a leader in the network of clinics. We value your strong connection to the advocacy community and your leadership in providing comprehensive adult care consistent with the 2018 guidelines.”
Prakash hopes the recognition will help the center establish an educational program that allows junior faculty and fellows to participate in clinical care and research.
“As we build out the program, we’ll have a database on TS that will allow us to evaluate disorders over time – which we couldn’t do if we were providing piecemeal services. We’re looking forward to tracking our patients more closely, and hopefully uncovering findings that will be useful for others in the field.”
To learn more about the center, visit here or call (832) 325-7344.