The Ehlers-Danlos Society Centers and Networks of Excellence – Centers of Excellence Designation Criteria

Centers of Excellence Criteria

The criteria below apply the principles of the C.A.R.E model to the Centers of Excellence. These are the minimum standards for COE designation and re-designation.  

NOTE: Research Centers of Excellence do not need to satisfy the clinical criteria from this list. All non-clinical criteria are required for Research COE designation. 

To gain and retain COE status, partnering organizations will demonstrate each of the following: 

Minimum Criteria

  • Centers should practice a patient-centered approach to care through: 
    • Listening, validating, and showing a commitment to inclusivity 
    • Offering exceptional care and management options 
  • Commitment to diagnosing using only the 2017 internationally peer-reviewed criteria, management, and care guidelines  
    • Acknowledging the same commitment for any future updated work that replaces the 2017 criteria
  • Multidisciplinary case discussions must occur on a fixed frequency  
  • A demonstrated proficiency in The Ehlers-Danlos Syndromes, by any of the following:
    • Completion of EDS ECHO, has seen at least 20 EDS/HSD complex patients, publication(s) in peer-reviewed literature on EDS/HSD/comorbidity topic(s), has attended any two Ehlers-Danlos Society conferences with CME credits offered 
  • Remain up to date on all relevant compliance trainings and certifications 
    • E.g. HIPAA, GDPR, DEI training, etc.  
  • Centers will occupy physical spaces with full disability compliance and the ability to offer adaptations when needed 
  • Payment options will be made accessible to all patients, regardless of socioeconomic status
  • Participating in review for re-designation 
  • A minimum of three practitioners of different specialties within the same institution  
  • Administrative staff  
  • On-staff mental health professional and/or Genetic counselor   
  • Designate one member as a Center Lead to: 
    • Coordinate clinical care and practitioners 
    • Lead multidisciplinary case discussions 
  • Center Lead or their designee will attend annual CNE Conference to teach and learn 
  • Remains up to date on all relevant compliance trainings and certifications 
    • E.g., HIPAA, GDPR, DEI training etc.  
  • Facilitate feedback survey for each patient 
  • Each Center will facilitate patient engagement in research activities
    • This includes a procedure for providing patients an opportunity to sign up to the DICE Global Registry  
  • Centers will express an interest in contributing to published collaborative research in peer-reviewed journals or equivalent processes
  • Direct patients to educational materials 
    • E.g., flyers, handouts, The Ehlers-Danlos Society website 
  • Clinical lead or their designee from each Center to join the CNE ECHO Program 

Supplemental Criteria

In addition to the minimum designation criteria, partnering organizations applying to become a Center of Excellence will demonstrate at least 4 of the following from any category:

  • Sending a delegate to additional conferences hosted by The Ehlers-Danlos Society
    • E.g., Global Learning Conference, International Scientific Symposium, etc.
  • Administrative support for coordinating scheduling, referrals, etc. 
  • Conducting research, whether clinical trial or investigator initiated
  • Demonstrating research proficiency in the Ehlers-Danlos syndromes
  • Assisting in dissemination of research findings 
  • Speaking or presenting about EDS/HSD at conferences, poster sessions, seminars, etc.
    • Including those not hosted by The Ehlers-Danlos Society  
  • Provide training opportunities for students and healthcare professionals
    • Internships, shadow, fellowships, etc.  
  • Demonstrating a commitment to community education

Specialties Accepted For The 2022/23 Application Cycle

  • Complementary & Alternative/Integrative Medicine 
  • Comorbidities 
  • EDS Subtypes 
  • Genetics 
  • Geriatric 
  • Nutrition
  • Obstetrics & Gynecology
  • Orthopedics
  • Pain Management
  • Pediatrics
  • Physical Therapy
  • Research
  • Surgery

Glossary of Terms

C.A.R.E – Care, Access, Research, Education
DICE – Data, Inclusion, Collaboration, Excellence
COE – Centers of Excellence
CNE – Centers & Networks of Excellence
CME – Continuing Medical Education
HIPAA – Health Insurance Portability and Accountability Act
GDPR – General Data Protection Regulation
DEI – Diversity, Equity, and Inclusion

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