Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry

Purpose

INSIGHTS is a registry research study that collects key information on medical history for girls and women with Turner syndrome and the clinical care they receive. This includes genetic tests, imaging, medications, and more for hundreds of patients seen at a number of clinics across the US. In addition to learning a lot about the current state of health for individuals with TS, INSIGHTS serves as an infrastructure to conduct future studies are meaningful to patients and their families.

Condition

  • Turner Syndrome

Eligibility

Eligible Ages
All ages
Eligible Sex
Female
Accepts Healthy Volunteers
No

Inclusion Criteria

  1. Individuals with TS and TS variants as defined by the TS Clinical Practice Guideline definition (karyotype consistent with TS, phenotypic female, clinical feature(s) of TS) 2. Informed consent/assent as appropriate

Exclusion Criteria

a. Lack of a TS diagnosis on file

Study Design

Phase
Study Type
Observational [Patient Registry]
Observational Model
Other
Time Perspective
Prospective

Recruiting Locations

Children's Hospital Colorado
Aurora, Colorado 80045
Contact:
Shanle M Davis, MD, PhD
720-777-6073
shanlee.davis@childrenscolorado.org

Children's National
Washington D.C., District of Columbia 20010
Contact:
Roopa Shankar, MD
roopakshankar@gwu.edu

Lurie Children's
Glenview, Illinois 60026
Contact:
Wendy J Brickman, MD
wbrickman@luriechildrens.org

University of Kansas
Lawrence, Kansas 66045
Contact:
Kelsie Kelly, MD
kkelly3@kumc.edu

UNC Hospitals Children's Specialty Clinic
Chapel Hill, North Carolina 27514
Contact:
Jennifer Law, MD, MSCR
lawj@med.unc.edu

Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio 45229
Contact:
Iris Gutmark-Little, MD
iris.little@cchmc.org

Nationwide Childern's Hospital
Columbus, Ohio 43205
Contact:
Jennifer Ladd, MD, MSc
614-722-4425
jennifer.ladd@nationwidechildrens.org

Children's Hospital of Philadelphia
Philadelphia, Pennsylvania 19104
Contact:
Vaneeta Bamba, MD
bamba@email.chop.edu

The University of Texas Health Science Center at Houston
Houston, Texas 77030
Contact:
Siddharth K Prakash, MD
siddharth.k.prakash@uth.tmc.edu

Seattle Children's
Seattle, Washington 98105
Contact:
Luciana T Young, MD
luciana.young@seattlechildrens.org

More Details

Status
Recruiting
Sponsor
University of Colorado, Denver

Study Contact

Shanlee M Davis, MD, PhD
720-777-6073
shanlee.davis@childrenscolorado.org