# Advancing novel survey tools to increase participation and improve sexual and reproductive health data quality

> **NIH NIH R01** · IBIS REPRODUCTIVE HEALTH · 2024 · $59,000

## Abstract

PROJECT SUMMARY/ABSTRACT
The Institute of Medicine’s report on “The health of Lesbian, Gay, Bisexual, and transgender People,” called for
NIH-supported research to address the methodological challenges that have impeded research on the health
of transgender people – specifically, to improve strategies for reaching, larger, more diverse samples of
transgender persons in the United States. Historically, research on sexual and reproductive health (SRH) has
excluded or misclassified transgender, nonbinary, and intersex (TNBI) people due to presumptions that
pregnancy and related outcomes can be experienced solely by cisgender women. However, TNBI people plan
for and carry pregnancies, and thus require high-quality and evidence-based healthcare. Despite this need,
existing data on the SRH needs of TNBI populations primarily come from convenience samples-- small in size
and/or limited in geographic scope. The dearth of representative data has meant, critically, that SRH providers
do not have adequate evidence upon which to rely to ensure that the SRH needs of their TNBI patients are met
within existing healthcare services--thereby contributing to lower quality care and SRH disparities among these
populations. And while data on transgender and nonbinary people are scarce, data on intersex people are
even scarcer. Consequently, this study aims to test methods of improving the research participation, retention,
and quality of collected data among TNBI people in the United States. The specific aims include: (1) recruit a
large, diverse sample of TNBI people from across the United States, (2) collect longitudinal data on core SRH
outcomes, and (3) improve retention and data quality among TNBI participants in SRH research as compared
to standard methods. To achieve these aims, we will implement a four-arm, parallel design, randomized control
trial that randomizes participants to receipt of zero, one, or two novel survey features in their online survey: a
gender-inclusive anatomical organ inventory for screening into survey logic, and/or customizable survey
language to personalize their survey experience. The control group will be randomized to screening based on
a 2-part gender identity question, and use of standard medical terms. The research will address challenges
encountered in previous SRH research with TNBI populations and will contribute to the evidence around best
practices for data collection with other populations historically characterized as “hard-to-reach” in the context of
SRH, public health research, and clinical care. The evidence generated by this study could have wide-ranging
impacts—including refined determination of research and clinical care eligibility, improved research
participation, and better healthcare screening and treatment for TNBI populations. Beyond SRH and advancing
the evidence-based for TNBI people, this novel survey methodologies tested in this study could be applied
broadly to advance public health research approaches and...

## Key facts

- **NIH application ID:** 11109055
- **Project number:** 3R01HD109320-02S1
- **Recipient organization:** IBIS REPRODUCTIVE HEALTH
- **Principal Investigator:** Heidi Serene Moseson Lidow
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $59,000
- **Award type:** 3
- **Project period:** 2023-09-21 → 2028-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11109055

## Citation

> US National Institutes of Health, RePORTER application 11109055, Advancing novel survey tools to increase participation and improve sexual and reproductive health data quality (3R01HD109320-02S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/11109055. Licensed CC0.

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