TSGA Is excited to announce a new research project that will change the future of healthcare for girls and women with Turner syndrome.
TSGA has been working with a team of Clinic Directors to develop a multi-institutional, collaborative research registry to collect patient data that will allow us to learn more about TS. The INSIGHTS Registry will collect patient data from multiple Clinics in a shared format, allowing the data to be pooled and used to drive new and exciting research on TS. This Registry has the potential to collect more clinical data on Turner syndrome than ever before, creating interest in research and opportunities to fund research.
How can you participate in the INSIGHTS Registry?
Initially, six established Turner Syndrome Clinics will begin recruiting patients. To participate, families and patients will sign consent forms, either in person or remotely. Consent will allow each Clinic site to enter the data that has already been collected in the patient chart. Examples of this data include type of TS karyotype, age of diagnosis, growth and growth hormone history, changes in height and weight, thyroid health, cardiac or kidney defects, blood pressure readings, medications, and much more. Once your patient data is entered, it will help to build a nationwide source of TS data. There may also be opportunities to contribute either blood or saliva to a biobank.
Current and past patients of these Turner Syndrome Clinics may be eligible to participate:
- Children’s Hospital Colorado
- Ann & Robert H. Lurie Children’s Hospital of Chicago
- University of North Carolina at Chapel Hill
- Children’s Hospital of Philadelphia
- University of Texas Health Science Center at Houston Adult Clinic
- Children’s National
To enroll in this project, contact your Clinic or (contact information coming soon)
We need you to make the INSIGHTS Registry successful.
WHY IS a Turner Syndrome REGISTRY IMPORTANT TO THE TS COMMUNITY? At its simplest definition “a patient registry is a collection—for one or more purposes—of standardized information about a group of patients who share a condition or experience.” (source: https://www.ncbi.nlm.nih.gov/books/NBK164513/)
The INSIGHTS Registry is a collection of clinical data on girls and women with TS. All of the data will be entered into the registry in a standardized format, which has been defined by the leading TS Clinic Directors working on this project. The standardized format will allow the data to be pooled, resulting in what could become the largest collection of TS data in the U.S.
Why is it important to capture a large amount of clinical data? For example, if a researcher wants to study the occurrence and treatment of ear infections in girls with TS to see if there is a correlation to hearing loss, the more data she can access, the better the study outcomes will represent the reality of ear infections and hearing loss in the TS community. The INSIGHTS Registry is built to be collaborative and multi-institutional. If the six initial clinics each enter data on 50 patients, there will be clinical data for 300 patients:
Without the INSIGHTS Registry, a researcher could create and implement a study at Clinic #1 and have (in this example) patient data from 50 individuals. With the INSIGHTS Registry, this same researcher, could access all the ear and hearing data for 300 patients. Over the first 3 years, as the INSIGHTS Registry rolls out to other Clinic sites, the potential patient enrollment is over 1500 patients. The value of the research data cannot be overstated.
A benefit of the INSIGHTS Registry enrolling through the TSGA network of Clinics is that the clinics provide a pathway to integrate new findings into care. As data from the registry indicates new strategies, the Clinics are positioned to adjust systems of care to take advantage of new information.
When you enroll in the INSIGHTS Registry, you will be informed of privacy policies. Each Clinic that enrolls patients in the registry will have the process approved by their Institutional Review Board (IRB). This helps to ensure that patients rights and privacy are protected. Feel free to ask questions about how the registry protects your patient information at the time of enrollment.