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

Research Centers of Excellence Designation Criteria

The criteria below apply the principles of the C.A.R.E model to the Research Centers of Excellence (RCOE). These are the minimum standards for RCOE 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

  • Applying the 2017 internationally peer-reviewed criteria, management, and care guidelines   
    • Acknowledging the same commitment for any future updated work that replaces the 2017 criteria  
  • Remaining up to date on all relevant compliance trainings and certifications
    • E.g. HIPAA, GDPR, DEI training, etc.   
  • Participating in review process for re-designation  
  • A minimum of three researchers of different expertise within the same institution that have collaborated on peer-reviewed publications, and plan to continue publishing jointly
  • One delegate 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. 
  • Each Center will facilitate patient engagement in Society research activities
    • This includes using the DICE Global Registry where possible
  • Conducting qualitative, quantitative, or mixed-methods research
  • Centers must comply with their country-specific regulations for human subject protection
  • Centers will demonstrate a minimum of five publications specific to EDS, HSD, or their comorbidities
  • Assisting in dissemination of research findings
  • A delegate from each Center will join the CNE ECHO Program

Supplemental Criteria

In addition to the minimum designation criteria, partnering organizations applying to become a Research Center of Excellence will demonstrate at least three (3) 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 to coordinate recruitment, regulatory compliance, documentation, etc.
  • Express an interest in researching under-studied areas
  • Integrate DEI principles into research inclusion criteria
  • 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
    • E.g., internships, shadowing, fellowships, etc.  
  • Direct patients to educational materials
    • e.g., flyers, handouts, The Ehlers-Danlos Society website

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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