Genetic Counseling Program

Untitled Document

Twin-Twin Transfusion Syndrome:  A systematic Review and Meta-Analysis..By Natanya Fleming

Capstone Project Committee: Jessica P. Hooks, MS, CGC (Charlotte Fetal Care Center), Chair; Randi C. Stewart, MS, CGC (UNCG); Courtney D. Stephenson, MD (Charlotte Fetal Care Center); Saju D. Joy, MD (Charlotte Fetal Care Center); and Scott Richter, PhD (UNCG), Statistical Consultant

Twin-Twin Transfusion Syndrome (TTTS) is a problem of unequal sharing of placental supply in monochorionic twins, often leading to fetal demise. Research on TTTS is well-represented in the scientific literature, but individualized, optimal treatment protocols have yet to be determined. In order to have the most successful neonatal outcomes, it is important to determine what presenting information will lead to the best treatment decision. Once identified, this data must be easily organized, stored, and retrieved in order to be shared within and between fetal care centers. Thus, a database consisting of theory- and research-driven data points that predict staging and intervention, diagnosis, and ultimate outcome of the disease is a necessary development in learning more about treatment for TTTS. This study is a methodical and systematic meta-synthesis of relevant research articles about TTTS to identify data points recommended for inclusion in a TTTS database. These data points were included in a survey sent to all NSGC members to confirm the accuracy and reliability of these factors based on the experience of other fetal therapy experts. Results noted many fetal care centers have databases, but almost 90% believed standardized data points would be helpful. The data also noted inconsistencies and non-consensus between genetic counselors’ responses and the literature review in respect to which data points would be most relevant to include in a database for patients with TTTS. This further emphasizes the need for standardized data points based in primary literature among fetal care centers for patients with TTTS. Suggestions for database construction are discussed. Standardizing databases as such between TTTS centers may help to answer research questions effectively and efficiently in the future.

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  • "I chose to attend UNCG because of its shared learning environment and the access to some of the leading institutions in the country. "

  • "UNCG is a great fit for me. The program directors have extensive experience in the world of genetic counseling and provide you with opportunities to work with some of the best medical centers in the country. Our location allows us to have expert guest lecturers, many of whom you also get to work alongside or observe in your clinical rotations in your second year. We also have some really wonderful and unique opportunities as a part of this program: we observe in syndrome specific support groups and clinics, tour genetic laboratories, and are matched with a family with a genetic disease to learn what it is like to live with a genetic condition. Finally, our directors are genuinely invested in each of us, and care about our success and getting to know each of us personally."

  • "The director and assistant director do their best to ensure that our program provides a collaborative learning experience.  Both are active members of the Genetic Counseling community and strive to introduce you to all aspects of this field.  We also have renowned clinical sites and the beautiful state of North Carolina at our disposal.”