This Research Project, led by Miranda Margetts, Ph.D., built directly upon the progress and insights obtained in a previous CAIRHE Pilot Project examining health care and outcomes for rural females with congenital uterine anomalies (CUAs, also known as Mullerian Anomalies), a National Institutes of Health (NIH) Sexual and Gender Minority health disparity research population. CUAs are differences of development of the female reproductive tract, impacting around 7% of the general female population, resulting in a variety of health concerns including pregnancy complications, pelvic pain, infertility, and in severe cases, absence of the uterus and upper portion of the vagina. Females with CUAs require a range of health care expertise related to diagnoses, treatment, and follow up care throughout their lifetime.

This project provided a valuable opportunity to: (1)engage the Billings Clinic CUA patient community in focus groups to expand upon insights obtained from Pilot Project informant interviews, and to define priorities for future patient-driven research; (2) assess Mountain West health system administrative records to (a) reveal the prevalence and extent of interstate travel required to receive care for CUA patients in the Mountain West, and (b) stratify gynecological cancer risk for women with CUAs according to type of cancer and variation of anomaly; and (3) examine the financial burdens and insurance barriers related to CUA-related health care procedures to reveal the extent of important compounding disparities in terms of health care cost and access to medically necessary reproductive care for this patient community.

Given our ability to continue fostering partnerships with our CUA patient and provider community, the project will support the continued quantitative and qualitative analysis of clinical outcomes and patient experiences, and strengthen collaborations with regional patients and their providers across the Mountain West. Successful completion of our aims will ultimately assure patients as research partners, foster broader collaboration opportunities with regional providers caring for these women (including for future recruitment), and reveal valuable clinical data outcomes to support future research studies.

Our Research Collaborators:

A Clinical Advisory Team has been established to identify supports and barriers related to CUA diagnoses and treatment, understand best practice workflow protocols relevant to treatment for the condition, guide the development of the research study, and aid in maintaining a Patient Advisory Board.

Margetts MacCarter Hedges Carter McCracken

Miranda Margetts

Bethany MacCarter

David Hedges

Benjamin Carter

Clayton McCracken
Milroy Shomento Hayes Margita Pelosi

Colleen Milroy

Stacy Shomento

Katherine Hayes

Alla Vash-Margita

Emanuele Pelosi

Members of the Project Team:

  • Miranda Margetts, Ph.D. (Project Leader), Assistant Research Professor, CAIRHE, MSU
  • Bethany MacCarter, Project Manager, CAIRHE, MSU
  • David Hedges, Ph.D., Lead Data Scientist, Billings Clinic
  • Benjamin Carter, Ph.D., Biostatistician, Billings Clinic
  • Clayton McCracken, M.D., OB/GYN, Billings Clinic
  • Colleen Milroy, M.D., OB/GYN and Reproductive Endocrinologist, Billings Clinic
  • Stacy Shomento, M.D., OB/GYN and Reproductive Endocrinologist, Billings Clinic
  • Katherine Hayes, M.D., Chief, Division of Pediatric and Adolescent Gynecology, Primary Children’s Hospital/University of Utah
  • Alla Vash-Margita, M.D., Chief, Division of Pediatric and Adolescent Gynecology, Yale University School of Medicine
  • Emanuele Pelosi, Ph.D., Fertility Theme Research Leader, University of Queensland, Australia

You can learn more about Congenital Uterine Anomalies and the research team in this Yale Medicine article: https://www.yalemedicine.org/news/mullerian-anomalies. 

For futher information about our project, please contact Project Leader Dr. Miranda Margetts at [email protected].