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