Our current research: understanding the relationship between joint hypermobility and systemic features in EDS

• Alongside the course, we are conducting an ongoing clinical research project titled: 

  “A case-control study of the relationship between joint hypermobility, chronic pain and associated systemic features.”

   

  The aim of this study is to:

  - Examine how joint hypermobility relates to various systemic features including chronic pain and others

  - Clarify which systemic features are meaningfully associated with EDS

  - Contribute to accurate assessment and better-informed management of people with EDS

   

  This research study is relevant to:

  - People with suspected or confirmed joint hypermobility or EDS who may wish to participate 

  - Healthcare and allied health professionals who may wish to refer suitable patients  
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• For Individuals with Joint Hypermobility or Ehlers-Danlos Syndrome: Participation in Our Current Research Study

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  The study follows the clinical evaluation framework outlined in the EZyEDS course. A referral from a physician or nurse practitioner licensed in Canada to participate in the research study is required.

  Participation involves undergoing:

• 1. a clinical assessment to exclude rheumatological and genetic conditions that may present as joint hypermobility

•  2. an evaluation of joint hypermobility, and

• 3. completion of questionnaires regarding systemic features and symptoms.

• The study may require three or more consultations.

  By participating, individuals may gain a clearer understanding of their joint hypermobility and systemic features while contributing to research aimed at improving the recognition, classification, and management of hypermobility-related conditions.

  Participation is voluntary, and all procedures are conducted in accordance with the Research Ethics Board of the University of Saskatchewan.

• Who Can Participate?

  You may be eligible to participate in this study if you:

  • 1. Are 18 to 39 years of age

  • 2. Have joint hypermobility, Ehlers-Danlos Syndrome (EDS), or a related hypermobility condition, or suspect that you may have one of these conditions

  • 3. Are able to attend in-person consultations in Saskatoon, Saskatchewan

  • 4. Have provincial health coverage in Canada

  • 5. Are able to obtain a referral from a physician or nurse practitioner licensed in Canada

  If you are unsure whether you meet these criteria, you may wish to discuss the study with your healthcare provider.

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  How to Participate

  Step 1 – Speak with your healthcare provider
  Discuss the study with your physician or nurse practitioner, who can determine whether a referral for consultation and participation in the research study is appropriate for you.

  Step 2 – Request a referral
  Your healthcare provider may send a referral for consultation to:

  Fax: 1 (306) 244-1930

  Step 3 – Review the study information and provide consent
  If you are eligible, you will receive a study information sheet explaining the procedures, risks, and benefits of participation. You will be asked to provide informed consent, in accordance with the Research Ethics Board of the University of Saskatchewan, before participating.

  Participation is voluntary, and you may withdraw from the study at any time.

   

  What happens next?

  After your referral is received and reviewed:

  A series of questionnaires regarding systemic features and symptoms will be sent to you. Please complete the questions and bring them with you to the first consultation.

  The first consultation will include a focused physical examination to exclude inflammatory, autoimmune, degenerative and genetic conditions that may cause joint hypermobility and pain.
• At a second consultation, two or more experienced assessors will determine the presence or absence of joint hypermobility.

  At a third consultation, the classification of the joint hypermobility condition that the participant meets will be discussed and a management plan based on the findings will be formulated.