Thank you for visiting TSGA’s website to learn about Clinic resources in communities across the country. TSGA has developed a Level of Care plan to help patients and families understand the services offered by Turner syndrome programs.
Turner syndrome care through a multidisciplinary program is an evolving model, and the way that care is provided to patients will look different at different locations, depending upon hospital policy and resources.
It has been TSGA’s experience that the best programs develop in communities that have a strong advocate. Patients and families need to ask for better resources, and then work with providers and institutions to grow programs. If you are interested in learning how to advocate for a Turner syndrome comprehensive care program in your community, connect with TSGA by sending an email to [email protected].
Below is a brief overview of each Turner Syndrome Level of Care for Pediatric Clinics. To see a more detailed list that was created for providers, click HERE.
This is a self-designated level that is led by either an endocrinologist or geneticist who is working to develop referral sources to specialty care such as cardiology, neuropsychology, and more. Level 1 Providers follow current TS Care Guidelines and share information to connect families with local and/or national advocacy organizations.
Level 2 – TS Coordinated Care Clinic
This is a self-designated level that meets all the requirements of Level 1 plus a Clinic page on their institution’s website, follow the KidNECT model of care, and offer same day visits with multiple specialists.
To learn more about the KidNECT Care Model, click HERE (see pages 3 and 4 of the Designation Criteria).
Level 3 – TS Coordinated Care Center
This is a self-designated level that meets all the requirements of Level 1 and 2, plus provides a transition program, has a relationship with a local patient/family advocate, coordinates access to all specialty providers, and is in the process of working to collect Turner syndrome data for research.
Level 4 – TS Regional Resource Center
Level 4 Regional Resource Centers are the most developed care models across the country and are designated by TSGA. In order to receive a Level 4 TS Regional Resource Center designation, these programs meet all the requirements of Levels 1, 2, and 3, plus are involved in multi-institutional Turner syndrome research, have a program to train or mentor medical students and Fellows, and are willing to provide support and resources to other providers in the region as needed.
Adult Care Clinic Program
A few institutions across the country offer a coordinated care program for Adults with Turner syndrome, and TSGA expects other programs to develop in the coming years. Each of these Adult Care Clinic Programs looks different depending on the resources of each institution. TSGA is in the process of developing Levels of Care Designation Criteria for Adult programs. Here, we are highlighting them as a resource.