Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet
| العنوان: | Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet |
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| المؤلفون: | Christa Flück, Anna Nordenström, S Faisal Ahmed, Salma R Ali, Marta Berra, Joanne Hall, Birgit Köhler, Vickie Pasterski, Ralitsa Robeva, Katinka Schweizer, Alexander Springer, Puck Westerveld, Olaf Hiort, Martine Cools |
| المصدر: | European Journal of Endocrinology. 181:545-564 |
| بيانات النشر: | Oxford University Press (OUP), 2019. |
| سنة النشر: | 2019 |
| مصطلحات موضوعية: | Male, Research design, medicine.medical_specialty, Endocrinology, Diabetes and Metabolism, Disorders of Sex Development, MEDLINE, Psychological intervention, 030209 endocrinology & metabolism, Context (language use), 03 medical and health sciences, 0302 clinical medicine, Endocrinology, Quality of life (healthcare), Multidisciplinary approach, Internal medicine, medicine, Humans, Child, Protocol (science), Data collection, Data Collection, Sexual Development, General Medicine, Reference Standards, Treatment Outcome, Research Design, 030220 oncology & carcinogenesis, Family medicine, Quality of Life, Female, Psychology |
| الوصف: | The treatment and care of individuals who have a difference of sex development (DSD) have been revised over the past two decades and new guidelines have been published. In order to study the impact of treatments and new forms of management in these rare and heterogeneous conditions, standardised assessment procedures across centres are needed. Diagnostic work-up and detailed genital phenotyping are crucial at first assessment. DSDs may affect general health, have associated features or lead to comorbidities which may only be observed through lifelong follow-up. The impact of medical treatments and surgical (non-) interventions warrants special attention in the context of critical review of current and future care. It is equally important to explore gender development early and refer to specialised services if needed. DSDs and the medical, psychological, cultural and familial ways of dealing with it may affect self-perception, self-esteem, and psychosexual function. Therefore, psychosocial support has become one of the cornerstones in the multidisciplinary management of DSD, but its impact remains to be assessed. Careful clinical evaluation and pooled data reporting in a global DSD registry will allow linking genetic, metabolomic, phenotypic and psychological data. For this purpose, our group of clinical experts and patient and parent representatives designed a template for structured longitudinal follow-up. In this paper, we explain the rationale behind the selection of the dataset. This tool provides guidance to professionals caring for individuals with a DSD and their families. At the same time, it collects the data needed for answering unsolved questions of patients, clinicians, and researchers. Ultimately, outcomes for defined subgroups of rare DSD conditions should be studied through large collaborative endeavours using a common protocol. |
| تدمد: | 1479-683X 0804-4643 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::47cce6abdad48f02b2ec5636b91b35c6Test https://doi.org/10.1530/eje-19-0363Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....47cce6abdad48f02b2ec5636b91b35c6 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 1479683X 08044643 |
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