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