Differences in gonadal tissue cryopreservation practices for differences of sex development across regions in the United States.
| Title: | Differences in gonadal tissue cryopreservation practices for differences of sex development across regions in the United States. |
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| Authors: | Siebert AL; Stanley Manne Children's Research Institute, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States.; Department of Urology, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.; Gomez-Lobo V; Pediatric and Adolescent Gynecology, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD, United States.; Johnson EK; Department of Urology, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States.; Division of Urology, Ann & Robert H. Lurie Children's Hospital, Chicago, IL, United States.; Nahata L; Department of Pediatrics, Pediatric Endocrinology, The Ohio State University College of Medicine, Columbus, OH, United States.; Orwig KE; Department of Obstetrics, Gynecology and Reproductive Sciences, Magee-Womens Research Institute, University of Pittsburgh School of Medicine, Pittsburgh, PA, United States.; Pyle LC; Roberts Individualized Medical Genetics Center, Division of Human Genetics and Department of Pediatrics, Perlman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States.; Witchel SF; Division of Pediatric Endocrinology, Department of Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, PA, United States.; Finlayson C; Division of Endocrinology, Department of Pediatrics, Ann & Robert H. Lurie Children's Hospital, Chicago, IL, United States.; Laronda MM; Stanley Manne Children's Research Institute, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States.; Division of Endocrinology, Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States. |
| Source: | Frontiers in endocrinology [Front Endocrinol (Lausanne)] 2023 Jan 17; Vol. 13, pp. 990359. Date of Electronic Publication: 2023 Jan 17 (Print Publication: 2022). |
| Publication Type: | Journal Article; Research Support, N.I.H., Intramural; Research Support, Non-U.S. Gov't |
| Language: | English |
| Journal Info: | Publisher: Frontiers Research Foundation] Country of Publication: Switzerland NLM ID: 101555782 Publication Model: eCollection Cited Medium: Print ISSN: 1664-2392 (Print) Linking ISSN: 16642392 NLM ISO Abbreviation: Front Endocrinol (Lausanne) Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: [Lausanne : Frontiers Research Foundation] |
| MeSH Terms: | Androgen-Insensitivity Syndrome*/pathology ; Turner Syndrome*/pathology ; Fertility Preservation*; Gonads/pathology ; Male ; Humans ; Child ; Cryopreservation ; Sexual Development |
| Abstract: | Objective: Some individuals with differences of sex development (DSD) conditions undergo medically indicated prophylactic gonadectomy. Gonads of individuals with DSD can contain germ cells and precursors and patients interested in future fertility preservation and hormonal restoration can participate in DSD-specific research protocols to cryopreserve this tissue. However, it is unclear how many providers or institutions offer gonadal tissue cryopreservation (GTC) and how widespread GTC for DSD is across the United States (US). The Pediatric Initiative Network (PIN) and Non-Oncologic Conditions committees of the Oncofertility Consortium sought to assess the current state of GTC for patients with DSD.; Methods: An electronic survey was sent to providers caring for patients with DSD via special interest groups of professional societies and research networks.; Results: The survey was administered between November 15, 2021 and March 14, 2022. A total of 155 providers responded to the survey, of which 132 respondents care for patients with DSD, and 78 work at facilities that offer medically indicated gonadectomy to patients with DSD diagnoses. They represented 55 US institutions including 47 pediatric hospitals, and 5 international sites (Canada, Denmark, Germany, Qatar). Of individual providers, 41% offer cryopreservation after prophylactic gonadectomy for patients with DSD (32/78). At an institutional level, GTC after medically indicated gonadectomy is available at 54.4% (24/46) of institutions. GTC is offered for a variety of DSD diagnoses, most commonly 45,X/46,XY DSD (i.e., Turner Syndrome with Y-chromosome material and mixed gonadal dysgenesis), ovotesticular DSD, complete androgen insensitivity syndrome (CAIS), and complete gonadal dysgenesis. Responses demonstrate regional trends in GTC practices with 83.3% of institutions in the Midwest, 66.7% in the Northeast, 54.6% in the West, and 35.3% in the South providing GTC. All represented institutions (100%) send gonadal tissue for pathological evaluation, and 22.7% preserve tissue for research purposes.; Conclusions: GTC after gonadectomy is offered at half of the US institutions represented in our survey, though a minority are currently preserving tissue for research purposes. GTC is offered for several DSD conditions. Future research will focus on examining presence and quality of germ cells to support clinical decision making related to fertility preservation for patients with DSD.; (Copyright © 2023 Siebert, Gomez-Lobo, Johnson, Nahata, Orwig, Pyle, Witchel, Finlayson and Laronda.) |
| Competing Interests: | The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. |
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| Contributed Indexing: | Keywords: differences of sex development (DSD); fertility preservation; gonadal tissue cryopreservation; intersex; oncofertility |
| Entry Date(s): | Date Created: 20230203 Date Completed: 20230206 Latest Revision: 20230208 |
| Update Code: | 20260130 |
| PubMed Central ID: | PMC9886870 |
| DOI: | 10.3389/fendo.2022.990359 |
| PMID: | 36733807 |
| Database: | MEDLINE |
Journal Article; Research Support, N.I.H., Intramural; Research Support, Non-U.S. Gov't