인문학
사회과학
자연과학
공학
의약학
농수해양학
예술체육학
복합학
DBpia AI
AI 에이전트
AI 아이디어
AI 리더
AI 뷰어
Citeasy
크롬 서지관리 다운로드
지원사업
학술연구/단체지원/교육 등 연구자 활동을 지속하도록 DBpia가 지원하고 있어요.
커뮤니티
연구자들이 자신의 연구와 전문성을 널리 알리고, 새로운 협력의 기회를 만들 수 있는 네트워킹 공간이에요.
초록·키워드
The growing visibility of transgender people, together with the parallel rise in scientific interest in transgender healthcare, underscores the need for standardized reporting and methodological approaches in both clinical practice and research. Efforts have been made to harmonize the classification of treatments, diseases and conditions, but some features are no longer sufficient to refer to the complexity of real-world settings. Despite the number of tools available [1], common guidelines regarding the clinical characterization of transgender populations in real-world settings are still lacking. Information such as gender, sexual orientation or other variables that can potentially influence the disease course are rarely collected in addition to biological sex. Since sex is related to multiple sclerosis (MS) etiology and gender can have an impact at a psychological, social and clinical level, they both need to be properly addressed. Collecting only sex at birth risks the loss of valuable information concerning clinical history, disease course and treatment of people with MS (pwMS) [2]. A transgender characterization is considered within the Italian Multiple Sclerosis and Related Disorders Register (RISM), a nation-based real-world project collecting more than 95,000 cases [3]. RISM collects personal and clinical data, and subjects are identified via their government-assigned tax identifier that includes sex at birth. RISM uses the Medical Dictionary for Regulatory Activities (MedDRA) to report medical conditions/clinical events, and to characterize the transgender population (https://www.meddra.org/news-and-events/news/english-meddra-version-280-now-available). The label “Gender-reassignment therapy” allowed us to identify a subject who is gender transitioning and two who completed the path by rectifying their personal data. The characterization of these cases is predominantly clinical (onset, diagnosis, pharmacological treatments, visits and relapses); no information has been found on non-pharmacological treatments (e.g., psychotherapy) nor laboratory tests (e.g., hormones dosages). These three cases were identified in only one out of the 157 MS centers currently contributing to RISM. All of the items reported as “Lowest Level Term” of the MedDRA's branches organization are intuitive and easy to pick, while issues arise when it comes to the higher levels of the classification. In fact, many items are misleading and/or medicalizing (i.e., sexual identity disorders, psychiatric disorders) affecting the process of data collection. Since MS is a female-predominant disease, in which sex hormones have a relevant role, the health status of transgender pwMS is particularly relevant. In case of sex/gender transition hormonal and gender-affirming therapies may induce/exacerbate the disease itself [2]. Furthermore, gender-affirming hormone use may have a different impact based on the biological sex [4]. It is essential to collect these data for both personalized treatment and public health purposes. Indeed, although studies have been conducted on the experiences and perceptions of LGBTQIA+ pwMS [5], studies investigating their clinical aspects are scarce. Having all three cases reported in a single center suggests that training of clinical staff on transgender issues is crucial not only for data collection, but also for providing optimal healthcare. More fine-grained data collection of personal data is urgently needed to better address the complexity of human life, enriching the quality of healthcare and clinical research. Pasquale Paletta: conceptualization, data curation, writing – original draft, writing – review and editing; Paola Mosconi: conceptualization, writing – review and editing; Roberto Bergamaschi: conceptualization, writing – review and editing; Claudia Santucci: writing – review and editing; Vito Lepore: conceptualization, data curation, writing – review and editing; Eleonora Tavazzi: conceptualization, writing – original draft, writing – review and editing. The authors thank Mrs. Sabrina Bidoli and Mrs. Sabrina Rutigliano for organizational assistance, and Dr. Giovanna Ramona Piredda for the collaboration. All the methods and procedures were performed in accordance with the guidelines and ethical standards and with the 1964 Helsinki Declaration and its later amendments. The RISM was reviewed and approved by the Ethics Committee of the coordinating centre (University of Bari, reference numbers 0,055,587 and 0,052,885), and by the local ethics committees of all participant centres. Each person enrolled signed a written informed consent. This analysis does not contain any individual person's information. R.B. has served on scientific advisory boards for Biogen, Merck-Serono, Novartis, Sanofi-Genzyme; received travel and congress expenses sustained by Biogen, Bristol Myers Squibb, Janssen, Novartis, Merck-Serono, Roche, Sanofi-Genzyme; received honoraria for speaking engagement from Biogen, Bristol Myers Squibb, Janssen, Merck-Serono, Novartis, Sanofi-Genzyme; received research support from Biogen, Merck-Serono, Novartis, Sanofi-Genzyme. E.T. received speaker honoraria from Biogen. The other authors declare no conflicts of interest. The data that support the findings of this study are available from the corresponding author upon reasonable request.
인공지능 문자 인식 모델을 통해 추출된 텍스트로, 일부 오타나 오류가 포함될 수 있으나 지속적으로 개선 중입니다.
오류를 발견하셨다면 해당 부분을 드래그한 후 ' 를 통해 신고해주세요.
오류를 발견하셨다면 해당 부분을 드래그한 후 ' 를 통해 신고해주세요.
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