Abstract: TH-PO1031
Women's Health and Kidney Outcomes in Tuberous Sclerosis Complex
Session Information
- Women's Health and Kidney Diseases
November 06, 2025 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Women's Health and Kidney Diseases
- 2200 Women's Health and Kidney Diseases
Authors
- Barrett, Lucas, The University of Iowa Stead Family Department of Pediatrics, Iowa City, Iowa, United States
- Goedken, Amber M, The University of Iowa College of Pharmacy, Iowa City, Iowa, United States
- Friel, Lara A., The University of Texas Health Science Center at Houston John P and Katherine G McGovern Medical School, Houston, Texas, United States
- Pounders, Ashley J., The West Clinic PLLC, Germantown, Tennessee, United States
- Bauer, Derek, University of Rochester Medical Center, Rochester, New York, United States
- Carter, Knute, The University of Iowa College of Public Health, Iowa City, Iowa, United States
- Harshman, Lyndsay, The University of Iowa Stead Family Department of Pediatrics, Iowa City, Iowa, United States
Background
Tuberous sclerosis complex (TSC) is a multi-system, genetic disease that affects up to 40,000 women in the US. The kidneys are affected by benign but locally invasive tumors–specifically, renal angiomyolipoma (AML). Among women with TSC, ~60% are estimated to develop AML. Women with TSC who develop AML may be at risk for life-threatening tumor sequelae secondary to fluctuations in estrogen and progesterone levels during pregnancy. The 2021 International TSC Consensus Guidelines outline a pattern for surveillance imaging to promote early detection of TSC-associated AML. Gaps in recommended imaging surveillance are common; however, it is unknown how gaps in imaging predict patient-level, TSC-associated morbidity – particularly among women who are at highest risk for sequelae due to AML.
Methods
The primary objectives of this study were: 1) determine patterns of renal imaging in the United States TSC population with a focus on potential sex-based differences in imaging, 2) ascertain presence of surveillance imaging before pregnancy, and 3) evaluate the frequency AML-associated hospitalization associated with pregnancy. Merative MarketScan data were utilized. The population was restricted to patients age 49 years or younger with a TSC diagnosis. Proportions of men and women (pregnant and non-pregnant) who received renal surveillance imaging were calculated by year, and proportion of pregnant women with surveillance imaging in the three years before pregnancy was determined. Incidence rates of AML-related hospitalization were reported among men, pregnant women, and non-pregnant women.
Results
Generally, non-pregnant women were more likely to receive surveillance imaging than men throughout the study period. Approximately 32% of pregnant women received surveillance imaging in the three years before pregnancy. Incidence rates of AML-related hospitalization were 2.3, 4.3, and 4.6 per 1000 person-years for men, non-pregnant women, and pregnant women, respectively.
Conclusion
Women with TSC are more likely than men with TSC to receive standard of care renal imaging surveillance and 68% of women do not have renal imaging performed in the three years before pregnancy. This gap in care may be a primary factor leading to risk for AML-associated hospitalization associated with pregnancy.
Funding
- Other U.S. Government Support