Turner Syndrome

Mission Statement

In order to enhance the clinical care of TS patients, the PES TS SIG aims to improve dissemination of knowledge, increase awareness, establish mechanisms for research and clinical collaborations, and organize advocacy efforts.

Goals and Objectives

• Educational Efforts
  • Educate and promote interaction and exchange of information amongst pediatric endocrinologists and other health care providers of TS patients to ensure safe and appropriate clinical care.
  • Educate pediatricians and other primary care providers on the clinical presentation and needs of TS patients, in order to decrease the age of diagnosis and therefore lead to early referral to specialists.
  • Establish and maintain a PES-sponsored website for use by TS providers.
    Develop a curriculum for pediatric and internal medicine residents, pediatric endocrine fellows, and adult endocrine fellows for the management of TS patients.
• Research Efforts
  • Identify crucial research topics and develop resources to accomplish them, and promote dissemination of results in targeted journals.
  • Create a database of TS programs and providers to facilitate networking and information/resource sharing.
  • Develop a TS registry to set the basis for clinical and outcomes research.
• Advocacy
  • Help achieve better health care access for patients by informing policy.
  • Increase the funding pool for TS-centered research via contact with NIH officials or other agencies.
  • Increase exposure of TS topics to primary care providers (pediatric and adult) and the general public.

Ongoing projects: 

• Subcommittees :
• Education subcommittee : Carolina DiBlasi [Liaison], Giovanna Beauchamp, Sejal Shah, Reema Habiby, Victoria Elliott:

1. Developing a medical student education tool on Turner syndrome

• Research subcommittee : Shanlee Davis, [Liaison], Nandini Vijayakanthi, Wendy Brickman

1. Opinion paper on “Cell-Free DNA Screening Positive for Monosomy X: Clinical Evaluation and Management of Suspected Fetal or Maternal Turner Syndrome.” Submitted to American Journal of Obstetrics and Gynecology.
2. Working on including additional sites and interested clinics to join the InsighTS registry

• Advocacy and Outreach subcommittee : Doris Fadoju [Liaison], Nandini Vijayakanthi

1. Coordination with TS Support groups and outreach to other providers
2. Creating an annual newsletter for TS-SIG