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International Consortium for Ehlers-Danlos syndrome – Review and Reclassification

Posted By Donna Wicks, April 18, 2017

The Hypermobility Syndromes Association (HMSA), has posted links below, to the articles which were produced as a result of the reclassification of Ehlers-Danlos syndromes and the new descriptor diagnosis for Hypermobility Spectrum Disorder. These documents were published by Wiley Online http://onlinelibrary.wiley.com and taken from the American Journal of Medical Genetics Part C: Seminars in Medical Genetics (Supplement to the American Journal of Genetics).

We would like to thank the International Consortium for the huge amount of work that has been carried out. The Consortium included globally recognised experts from all disciplines. These included many of the HMSA Medical Advisors, including our Chief Medical Advisor Dr Alan Hakim, Jane Simmonds, Prof. Qasim Aziz, Dr Brad Tinkle, Prof. Rodney Grahame etc.

Representing the HMSA as patient partners, we are grateful for the work of Claire Smith (HMSA Project and Partnership Director) and the  HMSA Chair, Robert Studholme-Smith.

The work of the Consortium, and the input from the HMSA, will lead to new opportunities for research into specific comorbidities, and of course,  the impact on people with these hypermobility syndromes. We acknowledge that some of our members have concerns over the Hypermobility Spectrum Disorder, and we will continue to be involved in any further work to do with this and the EDS syndromes. The HMSA has been working with Hypermobility Spectrum Disorders for 25 years, and our experience will be needed in the further work which already being planned.

We will of course, be working in collaboration with our sister charity Ehlers-Danlos Support UK, as well as the new ‘The Ehlers-Danlos Society’.  The HMSA’s Claire Smith will be involved in this continuing work and will keep us all informed along the way.

This may be a good time to start to learn the new terminologies that have arisen because of the review and to enable further clarity. Please take a look at the link provided here.

Change in Terminology

The benefits of having such an in-depth review of the classifications for Ehlers-Danlos and HSD, has meant that all professionals of various disciplines, will now have access to the newly published good practice guidelines. This is a huge benefit which will hopefully mean that people will not have to travel to established and recognised expert clinics.

Resources and New Guidelines for EDS

All the guidelines and papers below are available from the following site;

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.v175.1/issuetoc

2017 EDS International Classification

In the last decade, growing attention has been placed on joint hypermobility and related disorders. The new nosology for the Ehlers-Danlos syndromes (EDS), identifies 13 different types of EDS, and highlights the need for an updated and more reliable criteria. For the first time management and care guidelines have also been produced for the co-morbidities that can occur within EDS and HSDs.

As part of this work, the terminology of joint hypermobility and related disorders is summarised and a group of hypermobility spectrum disorders is proposed.

For further information please visit the links below:

Please visit the American Journal of Medical Genetics Part C: Seminars in Medical Genetics for the full supplement of papers.

Research Article

The 2017 international classification of the Ehlers–Danlos syndromes (pages 8–26) 

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31552/full  
Fransiska Malfait, Clair Francomano, Peter Byers, John Belmont, Britta Berglund, James Black, Lara Bloom, Jessica M. Bowen, Angela F. Brady, Nigel P. Burrows, Marco Castori, Helen Cohen, Marina Colombi, Serwet Demirdas, Julie De Backer, Anne De Paepe, Sylvie Fournel-Gigleux, Michael Frank, Neeti Ghali, Cecilia Giunta, Rodney Grahame, Alan Hakim, Xavier Jeunemaitre, Diana Johnson, Birgit Juul-Kristensen, Ines Kapferer-Seebacher, Hanadi Kazkaz, Tomoki Kosho, Mark E. Lavallee, Howard Levy, Roberto Mendoza-Londono, Melanie Pepin, F. Michael Pope, Eyal Reinstein, Leema Robert, Marianne Rohrbach, Lynn Sanders, Glenda J. Sobey, Tim Van Damme, Anthony Vandersteen, Caroline van Mourik, Nicol Voermans, Nigel Wheeldon, Johannes Zschocke and Brad Tinkle

Research Review

Ehlers–Danlos syndrome, classical type (pages 27–39)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31548/full  
Jessica M. Bowen, Glenda J. Sobey, Nigel P. Burrows, Marina Colombi, Mark E. Lavallee, Fransiska Malfait and Clair A. Francomano

Research Articles

Diagnosis, natural history, and management in vascular Ehlers–Danlos syndrome (pages 40–47)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31553/full

Peter H. Byers, John Belmont, James Black, Julie De Backer, Michael Frank, Xavier Jeunemaitre, Diana Johnson, Melanie Pepin, Leema Robert, Lynn Sanders and Nigel Wheeldon

 

Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history (pages 48–69)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31538/full

Brad Tinkle, Marco Castori, Britta Berglund, Helen Cohen, Rodney Grahame, Hanadi Kazkaz and Howard Levy

Research Reviews

The Ehlers–Danlos syndromes, rare types (pages 70–115)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31550/full

Angela F. Brady, Serwet Demirdas, Sylvie Fournel-Gigleux, Neeti Ghali, Cecilia Giunta, Ines Kapferer-Seebacher, Tomoki Kosho, Roberto Mendoza-Londono, Michael F. Pope, Marianne Rohrbach, Tim Van Damme, Anthony Vandersteen, Caroline van Mourik, Nicol Voermans, Johannes Zschocke and Fransiska Malfait

 

Measurement properties of clinical assessment methods for classifying generalized joint hypermobility—A systematic review (pages 116–147)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31540/full

Birgit Juul-Kristensen, Karoline Schmedling, Lies Rombaut, Hans Lund and Raoul H. H. Engelbert

Research Articles

A framework for the classification of joint hypermobility and related conditions (pages 148–157)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31539/full

Marco Castori, Brad Tinkle, Howard Levy, Rodney Grahame, Fransiska Malfait and Alan Hakim

 

The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome (pages 158–167)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31545/full

Raoul H.H. Engelbert, Birgit Juul-Kristensen, Verity Pacey, Inge de Wandele, Sandy Smeenk, Nicoleta Woinarosky, Stephanie Sabo, Mark C. Scheper, Leslie Russek and Jane V. Simmonds

 

Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—Hypermobile type (pages 168–174)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31543/full

Alan Hakim, Chris O’Callaghan, Inge De Wandele, Lauren Stiles, Alan Pocinki and Peter Rowe

 

Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type (pages 175–180)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31542/full

Alan Hakim, Inge De Wandele, Chris O’Callaghan, Alan Pocinki and Peter Rowe

 

Gastrointestinal involvement in the Ehlers–Danlos syndromes (pages 181–187)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31546/full

Asma Fikree, Gisela Chelimsky, Heidi Collins, Katcha Kovacic and Qasim Aziz

 

Orthopaedic management of the Ehlers–Danlos syndromes (pages 188–194)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31551/full 

William B. Ericson Jr. and Roger Wolman

Research Reviews

Neurological and spinal manifestations of the Ehlers–Danlos syndromes (pages 195–211)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31549/full

Fraser C. Henderson Sr., Claudiu Austin, Edward Benzel, Paolo Bolognese, Richard Ellenbogen, Clair A. Francomano, Candace Ireton, Petra Klinge, Myles Koby, Donlin Long, Sunil Patel, Eric L. Singman and Nicol C. Voermans

 

Pain management in the Ehlers–Danlos syndromes (pages 212–219)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31554/full

Pradeep Chopra, Brad Tinkle, Claude Hamonet, Isabelle Brock, Anne Gompel, Antonio Bulbena and Clair Francomano

Research Article

Oral and mandibular manifestations in the Ehlers–Danlos syndromes (pages 220–225)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31541/full

John Mitakides and Brad T. Tinkle

Research Reviews

Mast cell disorders in Ehlers–Danlos syndrome (pages 226–236)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31555/full

Suranjith L. Seneviratne, Anne Maitland and Lawrence Afrin

 

Psychiatric and psychological aspects in the Ehlers–Danlos syndromes (pages 237–245)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31544/full

Antonio Bulbena, Carolina Baeza-Velasco, Andrea Bulbena-Cabré, Guillem Pailhez, Hugo Critchley, Pradeep Chopra, Nuria Mallorquí-Bagué, Charissa Frank and Stephen Porges

 

Tinkle_et_al-2017-American_Journal_of_Medical_Genetics_Part_C-_Seminars_in_Medical_Genetics

 

 

We are still waiting for these documents to be converted into plain English and we will of course, publish them when they are released. If you have any queries please email info@hypermobility.org or if a professional please use professionals@hypermobility.org

Best wishes,
Donna Wicks, CEO


Disclaimer
The information provided by the HMSA should not take the place of advice and guidance from your own health-care providers. Material in this site is provided for educational and informational purposes only. Be sure to check with your doctor before making any changes in your treatment plan. Articles were last reviewed by our Medical Advisors as being correct and up to date on 5th June 2004.

Please be aware that information posted on the discussion boards is the opinion of the authors and has not necessarily been approved or endorsed by the medical advisors.