# Pathways to care and health outcomes among DSD patients

> **NIH NIH R01** · EMORY UNIVERSITY · 2020 · $599,125

## Abstract

PROJECT SUMMARY/ABSTRACT
The goal of this proposal is to develop a longitudinal study of patterns of care and health outcomes among
individuals who were diagnosed with disorders of sex development (DSD). We propose a study of DSD
patients from three large integrated health care systems (HCS): Kaiser Permanente Southern California
(KPSC), Kaiser Permanente Georgia (KPGA), and Kaiser Permanente Mid-Atlantic States (KPMAS). These
HCS share similarly structured electronic medical records (EMRs) and represent a geographically, socio-
economically, and demographically diverse population of nearly 5 million members. Most methods of data
collection described in the current application have been successfully implemented in our recently completed
or ongoing studies of transgender people. Applying these methods to the 2006-2015 data at the participating
sites, we identified 19,233 patients with “likely DSD” based on diagnoses or keywords in the medical records.
In addition, 47,107 individuals were identified as having “possible DSDs” (e.g., non-specified uterine anomalies
or hypospadias). The proposed project will address three areas of importance in DSD research: 1) patterns
and guideline-concordance of care; 2) controversies in treatment; and 3) comorbidities and long-term health
outcomes. We will use validated EMR data to estimate the percentages of confirmed DSD patients who
underwent diagnostic workup and received care according to current recommendations. We will examine
whether guideline concordant DSD management is associated with health outcomes, such as the need for
additional care and behavioral health problems later in life. The often cited area of disagreement is the optimal
timing of sex assignment surgery in cases of atypical or ambiguous genitalia with some advocating early
procedures and others arguing for a deferral. Another controversial issue is the common practice of a
prophylactic gonadectomy for DSD patients whose karyotype includes Y-chromosome material (+Y DSD). We
will use relevant KPSC, KPGA, and KPMA diagnostic and procedure codes to identify genital surgery and
gonadectomies. Using these data we will assess the association between timing of gender assignment
procedures and surgical complications, gender dysphoria, or other health problems later in life. We will also
review pathology reports to estimate the frequency and determinants of “positive gonadectomy,” i.e., with
evidence of malignant or premalignant lesions. We will then compare measures of health status of DSD
patients to the corresponding measures among age- and membership matched non-DSD male and non-DSD
female HCS enrollees (reference cohort). We will examine the incidence and prevalence of comorbidities and
long-term health outcomes across age groups, categories of DSD conditions, and relative to the matched
reference cohort. The proposed project will be carried out by a multidisciplinary team that includes experts in
DSD research and care, EMR-based data collection...

## Key facts

- **NIH application ID:** 9944654
- **Project number:** 5R01HD092595-04
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** Michael Goodman
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $599,125
- **Award type:** 5
- **Project period:** 2017-09-08 → 2022-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9944654

## Citation

> US National Institutes of Health, RePORTER application 9944654, Pathways to care and health outcomes among DSD patients (5R01HD092595-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9944654. Licensed CC0.

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