Turner Syndrome Global Alliance aims to have a direct impact on the lives of girls, women, and families living with TS by working to include TS in the national conversation on genetic research. We are the voice for a patient and parent perspective as we seek collaboration with scientists, researchers, and doctors to ensure that TS research and resources have meaningful outcomes.
WHY IS RESEARCH ON TURNER SYNDROME IMPORTANT?
WHY IS RESEARCH ON TURNER SYNDROME IMPORTANT?
RESEARCH is the key to improving healthcare for girls and women with TS. Medical visits and decisions are a reality for individuals living with TS. In order to make informed decisions, we need to have good information. Our community must take responsibility for providing data and research participants.
Understand, participate, and fund research for a better future.
UNDERSTAND RESEARCH: Stay educated on the latest TS information. Make sure your doctors have read the updated professional care guidelines. Familiarize yourself with the family version of the guidelines. Find these documents at www.TSGAlliance.org under RESOURCES/PROFESSIONAL.
PARTICIPATE in RESEARCH: Always look for opportunities to participate in TS research – many studies are made specifically to learn more about TS in young girls. Everything we know about TS and health today, we know because someone before us participated in research. Let’s ensure that we continue to build the knowledge base about TS for future generations.
FUND RESEARCH: The reality is that research takes money. Turner syndrome research has not been a national priority and is not funded by government grants. Families must be willing to fund research with donations. If you are interested in making a donation to directly support TSGA’s work to increase research, click here (link to donation page).
TSGA Is excited to announce a new research project that will change the future of healthcare for girls and women with Turner syndrome.
What is the INSIGHTS Registry?
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.
FUNDING POLICY STATEMENT
Turner Syndrome Global Alliance (TSGA) will award grant funds to support projects that are important to the Turner syndrome community to improve health care and advance knowledge of TS through research. TSGA primarily funds specific projects with specific outcomes. All awardees will have presented a written proposal with agreed upon milestones, timelines, and reporting schedules. The budget for each grant should reflect all of the expenses that are required for, and can be tracked directly to, the grant project.
TSGA’s primary responsibility as a funder is to be a good steward of the funds raised by the Turner syndrome community of girls, women, and families. Families living with Turner syndrome are already burdened by the costs of managing a loved one’s health journey with a rare disease. Donations to TSGA to fund our work are primarily raised by the patient advocate community and therefore, TSGA, seeks to have 100% of funds directly impact grant outcomes.
DIRECT COST POLICY
Direct costs are those costs that can be identified with a particular program or project, such as salaries for project staff and materials required for the project. Direct costs would not be incurred if not for the existence of the program or project being funded. TSGA will fund direct costs for a program that are anticipated and included in the approved project proposal.
INDIRECT COST POLICY
TSGA recognizes that grant award recipients may have overhead costs that are not directly attributable to the proposed project but are necessary to carry out the proposed project. TSGA is not able to fund indirect costs, and therefore can only make grants to researchers and institutions that can absorb the indirect costs of the project.
USE OF GRANT FUNDS
Any use of grant funding outside the proposed budget is prohibited without prior knowledge and consent of TSGA. Unused funds will not be rolled over beyond the contract term nor can be used for general organizational budgetary line items by awardee. Unused funds over $200.00 will be returned to TSGA at the end of a funding cycle.