The International Consortium on EDS and HSD

International Consortium Logo

The International Consortium was created in 2014 by what was then EDNF and EDS UK, in preparation for the reclassification for the Ehlers-Danlos syndromes (EDS), and to create management and care guidelines for the first time, leading to the 2017 publication in the American Journal of Medical Genetics. It was clear there was a need for a global group to facilitate the work of this independent group of experts, and that need was a driving force in setting up The Ehlers-Danlos Society.

Experts are invited to join the International Consortium based on their clinical or research experience and their commitment to progress, research, and collaboration in working on the many challenges and questions faced by families, clinicians, and social agencies. Consortium members are organized by medical specialty and research interests into committees and groups coordinated by the Steering Committee.

The International Consortium is an independent working group of medical professionals and experts. The consortium’s administrative and event-planning needs are facilitated by The Ehlers-Danlos Society, but all work and opinions are independent and come solely from the consortium members.

Structure and Membership

Experts are organized into committees and groups based on medical specialty and research interests and coordinated by the Steering Committee. The Society is dedicated to bringing the community’s voice into all we do; there is a patient expert in every group and committee of the consortium. The Steering Committee is led by the Chief Scientific Officer of The Society (currently Prof. Fransiska Malfait) and consists of the chairs of the committees that represent the different types of EDS and The Society’s Chief Executive Officer.

The International Consortium has doubled in size since 2014. Membership now runs for a period of two years, and throughout the year people can apply to join any of the groups. Chairs are invited to serve by the Steering Committee, based on experience and contributions clinical and academic. Each chair decides on the members of their group or committee.

Become part of The International Consortium.

Become a Patient Expert — The patient expert panel is made up of the patient representatives that sit on the EDS and HSD International Consortium; there is one expert per group or committee.

2019/2020 Update

Since January 2019 The Consortium has been working hard on creating Common Data Elements (CDEs). CDEs are standardized key terms or concepts, established to be used in clinical research and studies both to enhance data quality and to ensure data can be used across sites and time.

The common data element is similar to an attribute; it functions as a key, which can then map to an associated value. Development and use of CDEs support standardization of terms and facilitates data sharing so that data can be compared and combined across studies. Research findings can then be generalized with respect to different research institutions, diverse populations, different regions, and interventions. 

Common data elements have been developed as a response to the healthcare industry’s need to develop clinical data content standards that can be used both for patient care in clinical settings as well as for secondary data uses. These may include disease surveillance, population, and public health, quality improvement, clinical research, and reimbursement. The National Institutes of Health, as well as other groups and institutions, advocate that researchers use CDEs in research.

The use of CDEs can reduce the cost and complexity of a study, and promote collective use for studies involving small sample sizes. The use of CDEs promotes robust analysis and accelerates evaluations of a larger body of scientific literature, and we recognize this will be of tremendous importance to EDS, HSD, and all the comorbidities.

In addition, since November 2018, the Hypermobility Committee has been working on the review and revision of the 2017 criteria for hEDS. Formal studies, audits of clinical practice, and clinician and patient surveys have identified several areas for development related to both the structure and content of the criteria. The hEDS/HSD Committee has developed a draft revision of the hEDS criteria. This now needs robust testing in a formal clinical study. It will then, with data from the study, need to be presented to stakeholders for opinion. The aim is to do this over 2020/21 in preparation for the Rome 2021 scientific meeting. Only then will it be published as the recommended revision to the 2017 criteria.

There is also work during 2020 and 2021 to review the classification for all types of EDS as part of the commitment to look at this every three years, in line with the International Symposiums. 

Committees

The steering committee oversees and coordinates the efforts of the International Consortium. The type-specific committees focus on the unique challenges of each type that make up the Ehlers-Danlos syndromes.

Working Groups

The working groups were formed to investigate the co-morbid diagnoses and symptoms associated with the Ehlers-Danlos syndromes. The groups have been tasked to identify the links between these co-morbidities and the Ehlers-Danlos syndromes and hypermobility spectrum disorders, to identify research pathways, and to provide guidance for the best clinical strategies to care for people with each of the co-morbidities.

REVIEW MEMBERS

  • Najla Alsiri
  • Raj Anand
  • Derik Anderson
  • Paldeep Singh Atwal
  • Seth Banks
  • Katrina Barton
  • Kimberly Carter
  • Katie Cleary
  • Subinoy Das
  • Elisabeth Davidson
  • Anne De Paepe
  • Shanda Dorff
  • Jefferson Doyle
  • John Fagan
  • Irman Forghani
  • Kristen Leigh Coletti Giesler
  • Jen Glayzer
  • Stephen Grill
  • Kathleen Hopkins
  • Jonathan Kost, MD
  • Josee Larochelle
  • Catherine Lewan
  • Matthew
  • Nathan Mayberry
  • Abbie Morales
  • Siobhan O’Neill
  • Stephen Porges
  • Carol Rivas
  • Andrea Esperanza Rodriguez
  • Carey Ronspies
  • Peter Rowe
  • David Saperstein
  • Kimberly Saunders
  • Jennifer Schoon
  • Andrew Sharobeem
  • Patricia Stott
  • Tim Van Damme
  • Hugo Villarroel-Ábrego