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Caring for individuals with a difference of sex development (DSD): a Consensus Statement
Martine Cools1, Anna Nordenström2, Ralitsa Robeva3
1Department of Paediatric Endocrinology, Ghent University Hospital, University of Ghent, Ghent, Belgium. martine.cools@ugent.be.
Nature Reviews. Endocrinology
|May 18, 2018
Summary
Lifelong care for differences of sex development (DSD) is crucial, as adult care access is limited. This consensus statement provides recommendations for lifelong DSD management and research priorities.
Area of Science:
- Endocrinology
- Genetics
- Pediatrics
Background:
- Differences of Sex Development (DSD) are congenital conditions affecting sex determination and differentiation.
- Previous management revisions focused on pediatric care, leading to suboptimal outcomes.
- Adolescents and adults with DSD often face challenges accessing specialized lifelong care and have unanswered health questions.
Purpose of the Study:
- To provide evidence-based and experience-based recommendations for lifelong care of individuals with DSD.
- To highlight clinical research priorities for DSD conditions across the lifespan.
- To improve the understanding and management of DSD by medical professionals.
Main Methods:
- Development of a Consensus Statement by a European multidisciplinary expert group.
- Inclusion of patient representatives in the expert group.
- Summarization of existing evidence and clinical experience.
Main Results:
- Recommendations for holistic, multidisciplinary lifelong care for DSD patients.
- Identification of critical data collection needs for DSD across all ages.
- Prioritization of clinical research areas to address knowledge gaps in DSD outcomes and comorbidities.
Conclusions:
- There is a need for improved transition and access to expert adult care for individuals with DSD.
- Multicenter studies are needed to understand the long-term evolution and comorbidities of DSD conditions.
- This consensus statement aims to guide healthcare professionals in providing comprehensive DSD care and stimulate further research.
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