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Identifying and Counting Individuals with Differences of Sex Development Conditions in Population Health Research
Suegee Tamar-Mattis1, Kristi E Gamarel2, Alena Kantor3
11 interACT , Sudbury, Massachusetts.
LGBT Health
|July 7, 2018
Summary
Researchers explored a new survey question for identifying individuals with differences of sex development (DSD). The proposed DSD assessment was generally supported, with suggestions for enhancement to better represent this population in research.
Area of Science:
- Medical research
- Social sciences
- Public health
Background:
- Individuals with differences of sex development (DSD) are often underrepresented in research.
- Accurate identification is crucial for understanding health needs and disparities.
Purpose of the Study:
- To evaluate a proposed single-item assessment for identifying DSD in research settings.
- To gather feedback from individuals with DSD on the usability and clarity of the assessment.
Main Methods:
- An online survey was distributed to 111 adults identifying as intersex or having a DSD diagnosis.
- Participants reviewed and provided qualitative feedback on the draft assessment item.
Main Results:
- The single-item assessment received general endorsement as a tool for identifying the DSD population in research.
- Participants offered specific suggestions for improving the assessment's wording and comprehensiveness.
Conclusions:
- This study is a foundational step towards improving the identification of individuals with DSD in surveys.
- Enhancing research methodologies can lead to a better understanding of the needs of the DSD community.
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