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Research – building the evidence base

We support Ehlers-Danlos syndromes and hypermobility spectrum disorders (EDS and HSD) research. We share what we learn to strengthen understanding of EDS and HSD within the medical community, so our community gets better outcomes, better care and greater validation.

 

If you are a researcher and would like us to help share a study or find participants, please email research@ehlers-danlos.uk.

If you have taken part in research and want to see what came from it, you can explore our published research archives below.

If you are a GP or another healthcare professional, you can view our evidence base to support learning and decision making below.

Current research opportunities

Health information you can trust

A lot of people look for EDS and HSD research and health information online. It can be hard to know what to trust.

We are proud to have the Pif Tick accreditation. Pif Tick is the UK’s only assessed quality mark for print and online health and care information. The scheme was launched in 2020 to help people easily identify reliable, evidence-based health resources. Organiations displaying the logo must pass an annual assessment proving they meet 10 core criteria for accuracy, accessibility, and transparency.

  • EDS UK is committed to clear, reliable information
  • We check facts and sources
  • We use the best available evidence
  • We keep content up to date where we can
  • We aim to be balanced and easy to understand
  • We collaborate with healthcare professionals with special interest and expertise in EDS and HSD and have an expert Medical Advisory Panel that meet regularly
  • We work with other charities to develop and share information. When it is helpful, we also signpost people to trusted information and specialist support from partner organisations

 

Published research supported by EDS UK

TitleDescriptionModified
Autism and hypermobile Ehlers-Danlos syndrome (hEDS): A challenging combinationAuthors: S.L. Clark, E. Portch, R.L. Moseley, E. Arden-Close
Translating Research into Change Reporting the Lived Experience of hEDS and HSD in ScotlandAuthors: Kathryn Berg and Dervil Dockrell
Defining a core outcome set for hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: A Delphi consensus studyAuthors: Natalie L. Clark, Melissa Johnson, Amar Rangan, Lucksy Kottam, Andrea Hogarth, Sarah Scott & Katherine Swainston
The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders-validation in adultsAuthors: E R Ewer, R De Pauw, H Kazkazk, N Ninis, P Rowe, J V Simmonds, I De Wandele
Interventions to enhance work participation in people with chronic pain: a systematic review and meta-analysis including analysis of complex intervention componentsAuthors: Joanna McParland*, Lorna Booth, Grace Dibben, Ukachukwu Abaraogu, Elaine Wainwright, Evangelia Demou, Lynn Williams, Paul Flowers, Lisa Kidd, Jo Daniels, Hussein Patwa, Paulina Wegrzynek, Sarah Audsley, Ronald O'Kane, Amelia Parchment, Hannah Ranaldi, Karen Walker-Bone
An Adamts2 Knock-In Model of Dermatosparaxis Ehlers–Danlos Syndrome Reveals Defective Collagen MaturationAuthors: Taylor Petrucci-Nelson, Amy Weintraub, Matthew Huff, Emma Mach, Cortney Gensemer, Cara Virgin, Madalyn Osterhaus, Kathryn Byerly, Erika Bistran, Sydney Severance, Brian Loizzi, Jan Guz, Fu Lei Tang, Molly Griggs, Sunil Patel, Russell A. Norris
A retrospective survey to investigate the change of pain and fatigue through-out the menstrual cycle in the Ehlers Danlos hypermobile type population.Author: Bryn Taylor

Other published research

TitleDescriptionModified
Ehlers-Danlos Syndromes and Hypermobility Spectrum DisordersNational Library of Medicine
Understanding the issues of hypermobility spectrum disorders and hypermobile Ehlers–Danlos syndrome in primary care: a qualitative integrative reviewAuthors: Elinor Jones and Danielle Carrieri
Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet NeedsVarious authors
Throat and voice problems in Ehlers-Danlos syndromes and hypermobility spectrum disordersAuthors: Martin A Birchall, Chon Meng Lam, Gary Wood
Insights into TNXB-Related Classical-Like Ehlers–Danlos Syndrome: A Study of Polish PatientsAuthors: Junkiert-Czarnecka A, Pilarska-Deltow M, Kacprzak M, Łobodzińska A, Sobczyńska-Tomaszewska A, Linkowska K, Grzybowski T, Haus O 
Pregnancy in Women With Vascular Ehlers-Danlos Syndrome: A Case Series From the Registry of Pregnancy and Cardiac Disease (ROPAC) IIIAuthors: Peters P, van der Zande J, Prakash S, Harris J, Troost E, Tobler D, Bouma B, Roos-Hesselink J
Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparisonAuthors: Joanne C Demmler, Mark D Atkinson, Emma J Reinhold, Ernest Choy, Ronan A Lyons, Sinead T Brophy
Contemporary approach to joint hypermobility and related disordersAuthors: Marco Castori, Alan Hakim
The Ehlers–Danlos syndromesAuthors: Malfait F, Castori M, Francomano C, Giunta C, Kosho T, Byers P
A model linking emotional dysregulation in neurodivergent people to the proprioceptive impact of joint hypermobilityAuthors: Jessica A Eccles, Lisa Quadt, Sarah N Garfinkel, Hugo D Critchley
Effectiveness of a prenatal pilates program on ligamentous laxity and joint hypermobility in pregnant women: a dual-center randomized controlled trialAuthors: Merve Bulguroglu, Halil Ibrahim Bulguroglu , Baran Degirmenci, Selcan Suicmez, Cansu Gevrek Aslan, Serenay Zorlu Develik and Nevin Atalay Guzel
Impact of a Pilates intervention on physical function in children with generalised joint hypermobility and chronic musculoskeletal pain: A single-case experimental designAuthors: Elizabeth A. Hornsby, Leanne M. Johnston
A qualitative study exploring participants’ feelings about an online pilates program designed for people with hypermobility disordersAuthors: Leslie N. Russek , Jeannie Di Bon, Jane Simmonds , Catherine S. Nation, Cheyenne Vivlamore, Zion Higgins, Tiffany Jandrew
An Online Pilates Program for People with Hypermobility: A Pragmatic Clinical Trial Looking at Function, Interoception, Kinesiophobia, and Physical Activity LevelsAuthors: Leslie N Russek, Jeannie Di Bon, Anthony Herbland, Cheyenne Vivlamore Zion Higgins, Tiffany R Jandrew, Alison M Adams & Jane Simmonds

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