Page 41 - Read Online

Page 6 of 7 Donate et al. Rare Dis Orphan Drugs J 2023;2:4 https://dx.doi.org/10.20517/rdodj.2023.02

may include a list of questions to ask at clinic visits and promulgation of the “transition passport” that was
[16]
developed so that patients can anticipate their care needs . This approach may be more likely to succeed if
the educational materials are made available in Spanish and are paired with outreach to primary care
[13]
providers that reinforce guideline-directed care of patients with TS . We plan to utilize these strategies in
future clinical encounters. A nationwide collaborative network of Turner syndrome clinics, including the
Turner Syndrome Adult Comprehensive Care Center at UTHealth Houston, is well positioned to lead these
efforts.

Limitations: Patient-reported data is subject to recall bias. Subgroup analysis of non-White participants is
not possible because they were significantly underrepresented in our survey.

DECLARATIONS
Acknowledgments
We are profoundly grateful to the patients and families who participate in the UTHealth Turner Syndrome
Research Registry. Tatianna Contreras, Joana Castillo Di Giaciento, and Sandra Lopez-Lugo assisted with
patient outreach and data abstraction for this study.

Authors’ contributions
Analyzed the data and drafted the manuscript: Donate P
Designed the study and edited the manuscript: Rivera-Davila M, Prakash SK

Availability of data and materials
Not applicable.

Financial support and sponsorship
This work was funded in part by a gift from the Turner Syndrome Society of the United States.

Conflicts of interest
All authors declare no conflicts of interest.

Ethical approval and consent to participate
All participants signed a written informed consent document in which they agreed to authorize access of the
study team to their clinical data. The Committee for the Protection of Human Subjects at UTHealth
Houston reviewed and approved the study protocol (HSC-MS-15-0120) on December 17, 2021.

Consent for publication
Not applicable.

Copyright
© The Authors 2023.

REFERENCES
1. Kesler SR. Turner syndrome. Child Adolesc Psychiatr Clin N Am 2007;16:709-22. DOI PubMed PMC
2. Cui X, Cui Y, Shi L, Luan J, Zhou X, Han J. A basic understanding of Turner syndrome: incidence, complications, diagnosis, and
treatment. Intractable Rare Dis Res 2018;7:223-8. DOI PubMed PMC
3. Gravholt CH, Andersen NH, Conway GS, et al; International Turner Syndrome Consensus Group. Clinical practice guidelines for the
care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting. Eur J
Endocrinol 2017;177:G1-G70. DOI PubMed
4. Karila D, Donadille B, Léger J, et al. Prevalence and characteristics of gonadoblastoma in a retrospective multi-center study with