Clinical practice guidelines for the care of girls and women with Turner syndrome

Клинические руководства по уходу за девочками и женщинами с синдромом Тернера
Melanie J. Davies, Rebecca Knickmeyer, Karen O. Klein, Steven D. Chernausek, Joachim Woelfle, Sarah Corathers, Asma Deeb, Jeremy Cobbold, Christophe Corpechot, Richard J. Santen, David E. Sandberg, Sophie Christin‐Maître, Arianne B. Dessens, Claus Højbjerg Gravholt, Kathrin Fleischer, Mitchell E. Geffner, Doris Fadoju, Theo Sas, Paul Kruszka, Leena Nahata, N.H. Andersen, Shanlee Davis, Anthonie L. Duijnhouwer, Aneta Gawlik, Andréa Trevas Maciel‐Guerra, Iris Gutmark‐Little, David S. Hong, Siddharth K. Prakash, Roopa Kanakatti Shankar, Anne Skakkebæk, Kirstine Stochholm, Janiëlle AEM. van der Velden, The International Turner Syndrome Consensus Group, Francisco Álvarez‐Nava, Hanna Björlin Avdic, Camilla Mains Balle, Vaneeta Bamba, Ivonne Bedei, Åsa Bonnard, Wendy J. Brickman, Nicole M. Brown, Melissa Crenshaw, Tazim Dowlut‐McElroy, Victoria Elliott, Patricia Y. Fechner, Sarah A. Gitomer, Katya De Groote, J Hewitt, Cindy Ho, Christa Hutaff‐Lee, Tsuyoshi Isojima, Emma B. Johannsen, Masanobu Kawai, Ana Keselman, Jessica Kremen, Berit Kriström, Jennifer Law, Angela E. Lin, Karen J. Loechner, Nelly Mauras, Deborah Matthews, Trine Mikkelborg, Kristian H. Mortensen, Mackenzie Norman, Sheetal R Patel, Charmian A. Quigley, Lukas Ochsner Reynaud Ridder, Nicole Sheanon, Arlene Smyth, Helen Turner, Franciska Verlinde, Mette Viuff, Małgorzata Waśniewska, Berber van der Weijde, Jeanne Wolstencroft, Philippe Backeljauw, Mackenzie Norman, Janielle van der Velden
2024-05-13

Turner syndromecardiovascular healthclinical practice guidelinesdiagnosis and geneticsestrogen treatment
Turner syndrome (TS) affects 50 per 100 000 females. TS affects multiple organs through all stages of life, necessitating multidisciplinary care. This guideline extends previous ones and includes important new advances, within diagnostics and genetics, estrogen treatment, fertility, co-morbidities, and neurocognition and neuropsychology. Exploratory meetings were held in 2021 in Europe and United States culminating with a consensus meeting in Aarhus, Denmark in June 2023. Prior to this, eight groups addressed important areas in TS care: (1) diagnosis and genetics, (2) growth, (3) puberty and estrogen treatment, (4) cardiovascular health, (5) transition, (6) fertility assessment, monitoring, and counselling, (7) health surveillance for comorbidities throughout the lifespan, and (8) neurocognition and its implications for mental health and well-being. Each group produced proposals for the present guidelines, which were meticulously discussed by the entire group. Four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with systematic review of the literature. The guidelines project was initiated by the European Society for Endocrinology and the Pediatric Endocrine Society, in collaboration with members from the European Society for Pediatric Endocrinology, the European Society of Human Reproduction and Embryology, the European Reference Network on Rare Endocrine Conditions, the Society for Endocrinology, and the European Society of Cardiology, Japanese Society for Pediatric Endocrinology, Australia and New Zealand Society for Pediatric Endocrinology and Diabetes, Latin American Society for Pediatric Endocrinology, Arab Society for Pediatric Endocrinology and Diabetes, and the Asia Pacific Pediatric Endocrine Society. Advocacy groups appointed representatives for pre-meeting discussions and the consensus meeting.
1
Eight expert groups addressed specific care areas (diagnosis/genetics, growth, puberty/estrogen, cardiovascular health, transition, fertility, lifelong comorbidity surveillance, neurocognition) to form the guideline proposals.
2
Four specific questions underwent formal GRADE evaluation with systematic literature review to inform recommendations.
3
The guideline development was an international, multidisciplinary consensus involving multiple endocrine, cardiology, reproductive, pediatric societies, and patient advocacy representatives.
4
This guideline updates and extends previous recommendations, incorporating advances in diagnostics/genetics, estrogen treatment, fertility, comorbidity surveillance, and neurocognition.
5
Turner syndrome affects 50 per 100,000 females and requires multidisciplinary care across all life stages due to multisystem involvement.

Girls and women with Turner syndrome

Clinical practice guidelines for multidisciplinary care covering diagnosis and genetics, growth, puberty and estrogen treatment, cardiovascular health, fertility assessment and counselling, lifelong comorbidity surveillance, and neurocognition/neuropsychology

Publication Details
Publication Date
2024-05-13
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Authors
Melanie J. Davies
Rebecca Knickmeyer
Karen O. Klein
Steven D. Chernausek
Joachim Woelfle
Sarah Corathers
Asma Deeb
Jeremy Cobbold
Christophe Corpechot
Richard J. Santen
David E. Sandberg
Sophie Christin‐Maître
Arianne B. Dessens
Claus Højbjerg Gravholt
Kathrin Fleischer
Mitchell E. Geffner
Doris Fadoju
Theo Sas
Paul Kruszka
Leena Nahata
N.H. Andersen
Shanlee Davis
Anthonie L. Duijnhouwer
Aneta Gawlik
Andréa Trevas Maciel‐Guerra
Iris Gutmark‐Little
David S. Hong
Siddharth K. Prakash
Roopa Kanakatti Shankar
Anne Skakkebæk
Kirstine Stochholm
Janiëlle AEM. van der Velden
The International Turner Syndrome Consensus Group
Francisco Álvarez‐Nava
Hanna Björlin Avdic
Camilla Mains Balle
Vaneeta Bamba
Ivonne Bedei
Åsa Bonnard
Wendy J. Brickman
Nicole M. Brown
Melissa Crenshaw
Tazim Dowlut‐McElroy
Victoria Elliott
Patricia Y. Fechner
Sarah A. Gitomer
Katya De Groote
J Hewitt
Cindy Ho
Christa Hutaff‐Lee
Tsuyoshi Isojima
Emma B. Johannsen
Masanobu Kawai
Ana Keselman
Jessica Kremen
Berit Kriström
Jennifer Law
Angela E. Lin
Karen J. Loechner
Nelly Mauras
Deborah Matthews
Trine Mikkelborg
Kristian H. Mortensen
Mackenzie Norman
Sheetal R Patel
Charmian A. Quigley
Lukas Ochsner Reynaud Ridder
Nicole Sheanon
Arlene Smyth
Helen Turner
Franciska Verlinde
Mette Viuff
Małgorzata Waśniewska
Berber van der Weijde
Jeanne Wolstencroft
Philippe Backeljauw
Mackenzie Norman
Janielle van der Velden
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