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

Research Network of Excellence Criteria

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

To gain and retain RNOE 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 for any future updated work that replaces the 2017 criteria
  • Remain up to date on all relevant compliance trainings and certifications
    • e.g., HIPAA, GDPR, DEI training, etc.
  • Participating in review for re-designation
  • A minimum of three researchers of different expertise in separate institutions 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 network will facilitate patient engagement in Society research activities
    • This includes the DICE Global Registry for research studies where possible
  • Conducting qualitative, quantitative, and/or mixed-methods research
  • Networks must comply with their country-specific regulations for human subject protection
  • Networks will demonstrate a minimum of five (5) publications specific to EDS, HSD, or their comorbidities
  • Assisting in dissemination of research findings
  • Delegate from each Center to join the CNE ECHO Program

Supplemental Criteria

In addition to the minimum designation criteria, partnering organizations applying to become a Research Network of Excellence will demonstrate at least three (3) of the following criteria 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 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

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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