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

Networks of Excellence Criteria

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

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

To gain and retain NOE classification, partnering organizations will demonstrate each of the following: 

Minimum Criteria

  • Practicing a patient-centered approach to care through:
    • Listening, validating, and showing a commitment to inclusivity
    • Offering exceptional care and management options
  • Committing to diagnose 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
  • Demonstrating 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 EDS Society conferences with CME credits offered
  • Remaining up to date on all relevant compliance trainings and certifications
    • E.g. HIPAA, GDPR, DEI training, etc.
  • Capacity to coordinate care through referrals within network
  • Participating in review process for re-designation
  • A minimum of two practitioners of different specialties in separate institutions that provide care for patients within a geographical area
  • Designate one member as a Network Lead to:
    • Coordinate care and referrals across the collaborating institutions
  • Network Lead or their designee will attend annual CNE Conference to teach and learn
  • Remaining up to date on all relevant compliance trainings and certifications
    • E.g. HIPAA, GDPR, DEI training etc.
  • Facilitating a feedback survey for each patient
  • Enabling patient engagement in research activities
    • This includes a procedure for providing patients an opportunity to sign up to the DICE Global Registry
  • Expressing interest in contributing to published, collaborative research in peer-reviewed journals or equivalent processes
  • Directing patients to educational materials.
    • E.g., flyers, handouts, The Ehlers-Danlos Society website
  • Network Lead or their designee will join the CNE ECHO Program

Supplemental Criteria

In addition to the minimum designation criteria, partnering organizations applying to become a Network 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.
  • Access to mental health professional and/or genetic counselor
  • 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 at conferences, poster sessions, seminars, etc.
    • Including those not hosted by the Ehlers-Danlos Society
  • Provide training opportunities for students and healthcare professionals
    • E.g., internships, shadowing, 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
  • OB/GYN
  • 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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