The Turner Resource Network (TRN) is the result of a collaborative effort of scientists, clinicians, and TS advocates (individuals with TS and family members) aimed at improving the quality of TS health care. The TRN’s goals include establishing TS guidelines and promoting excellence in health care delivery, determining which TS research studies will be coordinated with the TS patient registry, and supporting TS regional centers to provide quality TS healthcare and TS research opportunities. The success of meeting TRN goals is dependent on the collective efforts of the TS community (such as advocacy organizations, providers, and researchers) to identify objectives, and collaborate on projects that support the timeline and needs within the TRN goals.
The TRN program can be viewed as an umbrella program assisting in coordinating multiple individual projects that are independently sponsored by a group or person.
Current projects coordinated through the TRN include:
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the Turner Resource Network Registry (TRNR); a patient powered registry which aims to be a large database containing, demographic, clinical, imaging and genetic information formed by combining 4 existing TS cohorts as well as limited self-reported data from the TS community. In 2017 the registry will aspire to import researcher obtained data back into the TRNR.
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Quality TS Resource Centers
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Quality care documents for Professional TS Care Providers
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The 2016 International TRN Symposium with the goal of revising the TS Clinical Practice Guidelines.
The TRN program is overseen by the TRN Steering committee which comprises key TS members that have accepted responsibility for the oversight of the TRN. The TRN committee members include, Chairman, *Michael Silberbach, MD of Oregon Health and Science University, *Cindy Scurlock, MA and Sarah Sullivan, of the Turner Syndrome Society of the U.S., *Kelly Ranallo and Denise Culin, of the Turner Syndrome Global Alliance, *Philippe Backeljauw, MD of Cincinnati Children’s Hospital, and *Scott Hawley, MD, of the Stowers Institute of Medical Research.
(* denotes voting members)
