The 2017 International Classification of the Ehlers–Danlos Syndromes publication was a pivotal moment that reshaped the understanding of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). This update laid the foundation for many research studies, all working towards a greater understanding of all types of EDS and HSD and how the conditions can be managed. 

Progress Driven by Research 

Empowered with the latest research, worldwide clinical and patient experience, and through engagement with health professionals and our community, an expert committee from the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders (IC) is now embarking on The Road to 2026. 

What Is The Road to 2026? 

The Road to 2026 is the path and process toward an update of the 2017 International Classification of the Ehlers-Danlos syndromes. The aim of this update is to advance the understanding and management of EDS and HSD on a global scale, reducing the time to diagnosis, and improving care. This work is anticipated to be completed and published in late 2026. 

The work will involve a thorough examination of what is currently known about EDS and HSD and an assessment of what is needed to improve global access to diagnosis and care. 

The following key elements will be considered:

  • An Update of the Classification Criteria: A comprehensive review and update of the classification framework. 
  • A Diagnostic Pathway: A clinically tested and refined diagnostic guide for EDS and HSD.  
  • Creation of Assessment and Treatment Pathways: Practical guidance on the assessment and management of symptoms and comorbidities that impact our community’s health, well-being, and quality of life.  

The following key elements will be considered:

  • An Update of the Classification Criteria: A comprehensive review and update of the classification framework. 
  • A Diagnostic Pathway: A clinically tested and refined diagnostic guide for EDS and HSD.  
  • Creation of Assessment and Treatment Pathways: Practical guidance on the assessment and management of symptoms and comorbidities that impact our community’s health, well-being, and quality of life.  

Who Is Involved in The Road to 2026?

A committee from the International Consortium on EDS and HSD will be working together and with wider stakeholder groups, including community members, over the next 2-3 years.

The Road to 2026 committee includes leading experts in the Ehlers-Danlos syndromes and hypermobility spectrum disorders, covering a breadth of experience in clinical expertise and research.

The Community Voice: Nothing About Us, Without Us 

Although the science and research outcomes will be driven by the healthcare professionals in the committee, the inclusion of the patient and patient organization voice is critical in this process to ensure that lived experience is included from conception to delivery.  

Representatives from The Ehlers-Danlos Society will be on the committee and will ensure a diverse range of community voices are collected and integrated into this research process to highlight systemic issues and reflect the lived experiences of our community globally. 

The Ehlers-Danlos Society has committed to providing administrative and financial support to all aspects of bringing together The Road to 2026 committee for this important work and global collaboration, and to ensure the community’s voice is heard and represented effectively. The Ehlers-Danlos Society’s representatives will provide updates following each meeting to inform our community along the way. 

The members of the committee are: 

The Community Voice: Nothing About Us, Without Us 

Although the science and research outcomes will be driven by the healthcare professionals in the committee, the inclusion of the patient and patient organization voice is critical in this process to ensure that lived experience is included from conception to delivery.  

Representatives from The Ehlers-Danlos Society will be on the committee and will ensure a diverse range of community voices are collected and integrated into this research process to highlight systemic issues and reflect the lived experiences of our community globally. 

The Ehlers-Danlos Society has committed to providing administrative and financial support to all aspects of bringing together The Road to 2026 committee for this important work and global collaboration, and to ensure the community’s voice is heard and represented effectively. The Ehlers-Danlos Society’s representatives will provide updates following each meeting to inform our community along the way. 

The members of the committee are: 

What Will Be Involved in The Road to 2026? 

The Road to 2026 committee work will include: 

  • Review all the relevant published literature and experience since the publication of the 2017 International Classification. 
  • Consideration of all the findings that are expected to come out over the next couple of years from important research studies such as the HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study and other molecular research, the hEDS/HSD Criteria Review Study, and studies into all types of EDS and HSD.  
  • Identifying topics that need to be discussed when considering whether changes should be made to the criteria.  
  • Exploration of these topics with clinicians, academics, and the community more widely to reach consensus agreement and ensure all necessary topics are covered. 
  • Identifying further work that needs to be done to resolve questions that cannot be answered without additional research. 
  • Proposal of changes (if any) to the criteria and seek stakeholder opinion on these proposals, including opinions from the EDS and HSD community. 
  • Producing recommendations and testing them in clinical practice if necessary. 

The committee’s findings will then go through rigorous scientific peer review. 

The Road to 2026 Timeline 

Throughout 2024 and 2025, The Road to 2026 committee will meet and go through the review and assessment process of the above points. 

At The Ehlers-Danlos Society’s 2025 International Scientific Symposium in Toronto, Canada, The Road to 2026 committee will meet with the scientific community to discuss its findings to date and to engage with stakeholders. 

The final publication is anticipated to be a journal special edition that will be released in late 2026, with authorship from The Road to 2026 committee and their invited collaborators across a breadth of expertise in EDS and HSD.  

The Ehlers-Danlos Society will fund the publication’s open access to ensure all health professionals and patient communities globally can access this for free. The Ehlers-Danlos Society will also ensure accessible resources and materials are created from this publication and made available in multiple languages for community members and clinicians worldwide to use in clinical practice.

Updates

The Road to 2026 Committee met in New York on April 13-14, 2024, to discuss the next stages of their work:  

The group met with a consultant who is advising them on conducting a Delphi study to collect expert opinions on the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). A Delphi study is a research survey technique that uses a series of questionnaires to achieve expert consensus on a topic. 

For Round 1 of the study, the committee is creating a questionnaire to send to experts on the International Consortium on EDS and HSD to gather their opinions on topics related to the Road to 2026. The results will identify topics that have expert consensus and topics that do not. 

In Round 2, the experts will review the results from Round 1 and fill out a second questionnaire containing the non-consensus issues from Round 1. Experts may adjust their responses based on the results from Round 1. 

Additional rounds may be conducted until an acceptable level of consensus is reached. The study will help guide the Road to 2026 work by identifying topics that have expert consensus and topics that are controversial.  

The group also discussed plans for the publication and dissemination of the Road to 2026 work and is working with publishers to ensure that updated information about EDS and HSD is widely available. 

Your Voice Matters 

You may have questions about how these changes could affect you or someone you care for. Your voice matters, and we are here to support you.  

In preparation for this meeting, The Ehlers-Danlos Society launched a feedback form to collect your questions, hopes, and concerns.  

Your responses were gathered and sent to The Road to 2026 committee ahead of this meeting, but the feedback form will remain open throughout the year to ensure as many voices as possible are heard. We have translated this survey into nine languages to capture vital global experiences.  

To take part in this feedback form, please click the appropriate link below: 

The Ehlers-Danlos Society will keep its community updated on how the Road to 2026 program is progressing. Sign up for our CONNECT newsletter to stay updated or follow us on social media. 

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