Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting

Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fiel...

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Vydané v:European journal of endocrinology Ročník 177; číslo 3; s. G1
Hlavní autori: Gravholt, Claus H, Andersen, Niels H, Conway, Gerard S, Dekkers, Olaf M, Geffner, Mitchell E, Klein, Karen O, Lin, Angela E, Mauras, Nelly, Quigley, Charmian A, Rubin, Karen, Sandberg, David E, Sas, Theo C J, Silberbach, Michael, Söderström-Anttila, Viveca, Stochholm, Kirstine, van Alfen-van derVelden, Janielle A, Woelfle, Joachim, Backeljauw, Philippe F
Médium: Journal Article
Jazyk:English
Vydavateľské údaje: England 01.09.2017
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ISSN:1479-683X, 1479-683X
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Abstract Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fields involved in the care of girls and women with TS. This paper is based on an international effort that started with exploratory meetings in 2014 in both Europe and the USA, and culminated with a Consensus Meeting held in Cincinnati, Ohio, USA in July 2016. Prior to this meeting, five groups each addressed important areas in TS care: 1) diagnostic and genetic issues, 2) growth and development during childhood and adolescence, 3) congenital and acquired cardiovascular disease, 4) transition and adult care, and 5) other comorbidities and neurocognitive issues. These groups produced proposals for the present guidelines. Additionally, four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with a separate systematic review of the literature. These four questions related to the efficacy and most optimal treatment of short stature, infertility, hypertension, and hormonal replacement therapy. The guidelines project was initiated by the European Society for Endocrinology and the Pediatric Endocrine Society, in collaboration with The European Society for Pediatric Endocrinology, The Endocrine Society, European Society of Human Reproduction and Embryology, The American Heart Association, The Society for Endocrinology, and the European Society of Cardiology. The guideline has been formally endorsed by the European Society for Endocrinology, the Pediatric Endocrine Society, the European Society for Pediatric Endocrinology, the European Society of Human Reproduction and Embryology and the Endocrine Society. Advocacy groups appointed representatives who participated in pre-meeting discussions and in the consensus meeting.
AbstractList Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fields involved in the care of girls and women with TS. This paper is based on an international effort that started with exploratory meetings in 2014 in both Europe and the USA, and culminated with a Consensus Meeting held in Cincinnati, Ohio, USA in July 2016. Prior to this meeting, five groups each addressed important areas in TS care: 1) diagnostic and genetic issues, 2) growth and development during childhood and adolescence, 3) congenital and acquired cardiovascular disease, 4) transition and adult care, and 5) other comorbidities and neurocognitive issues. These groups produced proposals for the present guidelines. Additionally, four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with a separate systematic review of the literature. These four questions related to the efficacy and most optimal treatment of short stature, infertility, hypertension, and hormonal replacement therapy. The guidelines project was initiated by the European Society for Endocrinology and the Pediatric Endocrine Society, in collaboration with The European Society for Pediatric Endocrinology, The Endocrine Society, European Society of Human Reproduction and Embryology, The American Heart Association, The Society for Endocrinology, and the European Society of Cardiology. The guideline has been formally endorsed by the European Society for Endocrinology, the Pediatric Endocrine Society, the European Society for Pediatric Endocrinology, the European Society of Human Reproduction and Embryology and the Endocrine Society. Advocacy groups appointed representatives who participated in pre-meeting discussions and in the consensus meeting.
Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fields involved in the care of girls and women with TS. This paper is based on an international effort that started with exploratory meetings in 2014 in both Europe and the USA, and culminated with a Consensus Meeting held in Cincinnati, Ohio, USA in July 2016. Prior to this meeting, five groups each addressed important areas in TS care: 1) diagnostic and genetic issues, 2) growth and development during childhood and adolescence, 3) congenital and acquired cardiovascular disease, 4) transition and adult care, and 5) other comorbidities and neurocognitive issues. These groups produced proposals for the present guidelines. Additionally, four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with a separate systematic review of the literature. These four questions related to the efficacy and most optimal treatment of short stature, infertility, hypertension, and hormonal replacement therapy. The guidelines project was initiated by the European Society for Endocrinology and the Pediatric Endocrine Society, in collaboration with The European Society for Pediatric Endocrinology, The Endocrine Society, European Society of Human Reproduction and Embryology, The American Heart Association, The Society for Endocrinology, and the European Society of Cardiology. The guideline has been formally endorsed by the European Society for Endocrinology, the Pediatric Endocrine Society, the European Society for Pediatric Endocrinology, the European Society of Human Reproduction and Embryology and the Endocrine Society. Advocacy groups appointed representatives who participated in pre-meeting discussions and in the consensus meeting.Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care. Previous guidelines have highlighted this, but numerous important advances have been noted recently. These advances cover all specialty fields involved in the care of girls and women with TS. This paper is based on an international effort that started with exploratory meetings in 2014 in both Europe and the USA, and culminated with a Consensus Meeting held in Cincinnati, Ohio, USA in July 2016. Prior to this meeting, five groups each addressed important areas in TS care: 1) diagnostic and genetic issues, 2) growth and development during childhood and adolescence, 3) congenital and acquired cardiovascular disease, 4) transition and adult care, and 5) other comorbidities and neurocognitive issues. These groups produced proposals for the present guidelines. Additionally, four pertinent questions were submitted for formal GRADE (Grading of Recommendations, Assessment, Development and Evaluation) evaluation with a separate systematic review of the literature. These four questions related to the efficacy and most optimal treatment of short stature, infertility, hypertension, and hormonal replacement therapy. The guidelines project was initiated by the European Society for Endocrinology and the Pediatric Endocrine Society, in collaboration with The European Society for Pediatric Endocrinology, The Endocrine Society, European Society of Human Reproduction and Embryology, The American Heart Association, The Society for Endocrinology, and the European Society of Cardiology. The guideline has been formally endorsed by the European Society for Endocrinology, the Pediatric Endocrine Society, the European Society for Pediatric Endocrinology, the European Society of Human Reproduction and Embryology and the Endocrine Society. Advocacy groups appointed representatives who participated in pre-meeting discussions and in the consensus meeting.
Author Sas, Theo C J
Sandberg, David E
Conway, Gerard S
Mauras, Nelly
Dekkers, Olaf M
Söderström-Anttila, Viveca
Gravholt, Claus H
Woelfle, Joachim
Geffner, Mitchell E
Quigley, Charmian A
Backeljauw, Philippe F
Stochholm, Kirstine
Rubin, Karen
Silberbach, Michael
Lin, Angela E
Andersen, Niels H
Klein, Karen O
van Alfen-van derVelden, Janielle A
Author_xml – sequence: 1
  givenname: Claus H
  surname: Gravholt
  fullname: Gravholt, Claus H
  organization: Departments of Molecular Medicine
– sequence: 2
  givenname: Niels H
  surname: Andersen
  fullname: Andersen, Niels H
  organization: Departments of Cardiology, Aarhus University Hospital, Aarhus, Denmark
– sequence: 3
  givenname: Gerard S
  surname: Conway
  fullname: Conway, Gerard S
  organization: Department of Women's Health, University College London, London, UK
– sequence: 4
  givenname: Olaf M
  surname: Dekkers
  fullname: Dekkers, Olaf M
  organization: Department of Clinical Epidemiology, Leiden University Medical Centre, Leiden, The Netherlands
– sequence: 5
  givenname: Mitchell E
  surname: Geffner
  fullname: Geffner, Mitchell E
  organization: The Saban Research Institute, Children's Hospital Los Angeles, Los Angeles, California, USA
– sequence: 6
  givenname: Karen O
  surname: Klein
  fullname: Klein, Karen O
  organization: Rady Children's Hospital, University of California, San Diego, California, USA
– sequence: 7
  givenname: Angela E
  surname: Lin
  fullname: Lin, Angela E
  organization: Department of Pediatrics, Medical Genetics Unit, Mass General Hospital for Children, Boston, Massachusetts, USA
– sequence: 8
  givenname: Nelly
  surname: Mauras
  fullname: Mauras, Nelly
  organization: Division of Endocrinology, Nemours Children's Health System, Jacksonville, Florida, USA
– sequence: 9
  givenname: Charmian A
  surname: Quigley
  fullname: Quigley, Charmian A
  organization: St Hubert's Island, New South Wales, Australia
– sequence: 10
  givenname: Karen
  surname: Rubin
  fullname: Rubin, Karen
  organization: Connecticut Children's Medical Center, Hartford, Connecticut, USA
– sequence: 11
  givenname: David E
  surname: Sandberg
  fullname: Sandberg, David E
  organization: Division of Psychology, Department of Pediatrics, University of Michigan, Ann Arbor, Michigan, USA
– sequence: 12
  givenname: Theo C J
  surname: Sas
  fullname: Sas, Theo C J
  organization: Department of Pediatrics, Dordrecht, The Netherlands
– sequence: 13
  givenname: Michael
  surname: Silberbach
  fullname: Silberbach, Michael
  organization: Department of Pediatrics, Doernbecher Children's Hospital, Portland, Oregon, USA
– sequence: 14
  givenname: Viveca
  surname: Söderström-Anttila
  fullname: Söderström-Anttila, Viveca
  organization: Väestöliitto Fertility Clinics, Helsinki, Finland
– sequence: 15
  givenname: Kirstine
  surname: Stochholm
  fullname: Stochholm, Kirstine
  organization: Center for Rare Diseases, Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark
– sequence: 16
  givenname: Janielle A
  surname: van Alfen-van derVelden
  fullname: van Alfen-van derVelden, Janielle A
  organization: Department of Pediatric Endocrinology, Radboud University Medical Center, Amalia Children's Hospital, Nijmegen, The Netherlands
– sequence: 17
  givenname: Joachim
  surname: Woelfle
  fullname: Woelfle, Joachim
  organization: Department of Pediatric Endocrinology, Children's Hospital, University of Bonn, Bonn, Germany
– sequence: 18
  givenname: Philippe F
  surname: Backeljauw
  fullname: Backeljauw, Philippe F
  organization: Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA
BackLink https://www.ncbi.nlm.nih.gov/pubmed/28705803$$D View this record in MEDLINE/PubMed
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Snippet Turner syndrome affects 25-50 per 100,000 females and can involve multiple organs through all stages of life, necessitating multidisciplinary approach to care....
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SubjectTerms Congresses as Topic - standards
Europe - epidemiology
Female
Humans
Ohio
Patient Care - methods
Patient Care - standards
Practice Guidelines as Topic - standards
Turner Syndrome - diagnosis
Turner Syndrome - metabolism
Turner Syndrome - therapy
United States - epidemiology
Women
Title Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2016 Cincinnati International Turner Syndrome Meeting
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