Evidence map›Paper›PMID 39449786›Full record

ArticleTransgender health2024

Transgender and Non-Binary Surgery Registry: Building a Patient-Focused Registry for Genital Gender Affirming Surgery.

Geolani W Dy, Gaines Blasdel, Daniel Dugi, Christi Butler, James M Hotaling, Jeremy B Myers, Isak Goodwin, Rachel Bluebond-Langner, Lee C Zhao, Cori A Agarwal

Abstract read
In one paragraph

Article in Transgender health, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Geolani W DyDepartment of Urology, Oregon Health and Science University, Portland, Oregon, USA.ORCID https://orcid.org/0000-0003-3646-8986
Gaines BlasdelDepartment of Urology, NYU Grossman School of Medicine, New York, New York, USA.ORCID https://orcid.org/0000-0002-5431-6540
Daniel DugiDepartment of Urology, Oregon Health and Science University, Portland, Oregon, USA.
Christi ButlerDepartment of Urology, University of California San Francisco, San Francisco, California, USA.
James M HotalingDivision of Urology, Department of Surgery, University of Utah School of Medicine, Salt Lake City, Utah, USA.
Jeremy B MyersDivision of Urology, Department of Surgery, University of Utah School of Medicine, Salt Lake City, Utah, USA.
Isak GoodwinDivision of Plastic and Reconstructive Surgery, Department of Surgery, University of Utah, Salt Lake City, Utah, USA.
Rachel Bluebond-LangnerDepartment of Urology, NYU Grossman School of Medicine, New York, New York, USA.
Lee C ZhaoDepartment of Urology, NYU Grossman School of Medicine, New York, New York, USA.
Cori A AgarwalDivision of Plastic and Reconstructive Surgery, Department of Surgery, University of Utah, Salt Lake City, Utah, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Purpose: High quality data regarding long-term clinical and patient-reported outcomes (PROs) of genital gender-affirming surgery (GGAS) are lacking, and transgender and non-binary (TGNB) community voices have not historically been included in research development. These factors limit the utility of current research for guiding patients, clinicians, payers, and other GGAS stakeholders in decision-making. The Transgender and Non-Binary Surgery (TRANS) Registry has been developed to meet the needs of GGAS stakeholders and address limitations of traditional GGAS research. Methods: Development of the TRANS Registry occurred over several developmental phases beginning in May 2019 to present. Stakeholder engagement was performed throughout these phases, including: determination of key clinical outcomes and PROs, creation and implementation of data collection tools within the electronic health record (EHR), and development of centralized registry infrastructure. Results: The TRANS Registry is a prospective observational registry of individuals seeking vaginoplasty and vulvoplasty. The EHR-enabled infrastructure allows patients and clinicians to contribute longitudinal outcomes data to the TRANS Registry. We describe our community engaged approach to designing the TRANS Registry, including lessons learned, challenges, and future directions. Conclusions: The TRANS Registry is the first multicenter initiative to prospectively track the health of individuals seeking vaginoplasty and vulvoplasty using EHR-enabled methods, engaging TGNB community members and clinicians as partners in the process. This process may be used as a model for registry development in other emerging fields where high-quality longitudinal outcomes data are needed.

Indexed as

community engagementregistrysurgerytransgendervaginoplasty

Identifiers

PMID39449786
PMCPMC11496892

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.