Background: The 2018 Turner Resource Network Symposium is designed to promote and inspire new medical research. Turner syndrome (TS) is a rare condition affecting approximately 80,000 girls and women in the United States, and there has been no concerted effort by the research community to expand knowledge on many important health questions related to the condition.
Proposed Solution: This meeting promotes Turner syndrome science by bringing together clinical and basic science investigators from diverse fields to develop a better understanding of TS biology, including X-chromosome deficiency. The symposium offers a solution by creating new clinical pathways for future evidence-based recommendations and an interdisciplinary strategy for advancing TS-related science.
Objectives: The objective of the meeting is to bring together clinical and basic science investigators from diverse fields to discuss molecular mechanisms, medical treatment challenges, and epidemiology of the health problems to support researchers’ interests and to attract new investigators in a patient-centered environment. The long-term objective is to increase interest in TS research that will improve care.
Activities: The symposium will run from Sunday, July 15 through Tuesday, July 17, 2018. The schedule includes presentations by experts on aspects of TS biology and designated time for discussion and work groups. Attendees will also be able to connect informally during breaks and meals.
Outcomes and Outputs: The projected outcome of this symposium is to promote research in TS that will translate to better care of patients. The TS community of patients and families is driving this process. A tangible outcome is that the knowledge and insights gained at the meeting will be disseminated to patients through advocacy organizations and to the medical community through publication.
Patient and Stakeholder Engagement Plan: The primary patients and stakeholders who will be impacted by this meeting are girls and women with TS and their caregivers/families. The Turner Syndrome Global Alliance (TSGA) is a patient advocacy organization. Kelly Ranallo, project lead and President of TSGA, will be participating as a presenting delegate. Patients and family members will be encouraged to attend for free. A second stakeholder group is made up of clinicians who work directly with patients with TS to support their medical needs. TSGA is bringing key leaders from 10 TS clinics. These professionals can have an immediate impact on patient health by sharing information and accessing new resources. Finally, TSGA is committed to keeping the patient community informed and educated and will disseminate information and research opportunities that develop from the symposium through its website and social media campaigns. TSGA also networks with TS clinics across the country and will share information with clinicians who are not able to attend.
Project Collaborators: TSGA works with the Turner Syndrome Society of the United States (TSSUS) in a collaborative relationship called the Turner Resource Network (TRN) to serve the Turner syndrome patient/family community. Additional TRN collaborators are Michael Silberbach, MD, of Oregon Health & Science University and Paul Kruszka, MD, MPH, of the National Institutes of Health. TSGA and TSSUS are each supporting the symposium through planning, organizing, recruiting attendees, and meeting management. Other collaborators are all the experts who have agreed to speak and Maximilian Muenke, MD, who has proposed to publish the meeting insights.