CORE Network Designation Criteria 

The criteria below outline the requirements to receive designation for the CORE Network of Excellence (CNE). These are the minimum standards for CNE designation and re-designation. For information about applying to the CORE Network, please see the Application Information page.

To gain and retain CORE Program status, applicants will demonstrate each of the following:

 Minimum Criteria 

General 

  • Members 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: 
    • e.g., 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.  
  • Members will occupy physical spaces with full disability compliance and the ability to offer adaptations when needed 

Staffing 

  • A minimum of three practitioners  
  • Administrative staff 
  • Designate one member as a CORE Lead to: 
    • Coordinate clinical care and practitioners 
    • Lead multidisciplinary case discussions 
  • CORE Lead or their designee will attend annual CORE meeting to teach and learn 
  • Facilitate feedback survey for each patient 

Research  

  • Each Member organization will facilitate patient engagement in research activities 
    • This includes  providing patients an opportunity to sign up to research activities with The Society, including the DICE Global Registry and Global Biobank. 
  • Engaging as a site in multi-site research within the CORE Network  

Education 

  • Direct patients to educational materials  
    • e.g., flyers, handouts, The Ehlers-Danlos Society website 
  •  At least one attendee from each CORE Member to join the ECHO CNE Program 

CORE Network of Excellence Supplemental Criteria

In addition to the minimum designation criteria, partnering organizations applying to become a Center of Excellence will demonstrate four to six (4-6) of the following criteria from any category:

 Supplemental Criteria 

General 

  • Sending a delegate to additional conferences hosted by The Ehlers-Danlos Society 
    • e.g., Global Learning Conference, International Scientific Symposium, etc. 

Staffing

  • Administrative support for coordinating scheduling, referrals, etc. 
  • On-staff mental health professional and/or Genetic counselor 

Research

  • Conducting qualitative, quantitative, or mixed-methods research 
  • Members must comply with their country-specific regulations for human subject protection    
  • Members will express an interest in contributing to published collaborative research in peer-reviewed journals or equivalent processes.  

Education 

  • 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  

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