FOR PATIENTS WITH EHLERS-DANLOS SYNDROMES

This research investigates how collagen, the primary protein in the skin, behaves differently in individuals with Ehlers-Danlos Syndrome (EDS)—specifically, the classical (cEDS) and hypermobile (hEDS) types. The goal is to understand how these changes affect skin strength and structure, and to develop more effective ways to diagnose and manage EDS.  

In EDS, collagen doesn’t form properly. This can cause the skin to become stretchy, fragile, and slow to heal. But we still don’t fully understand how these changes happen at the microscopic (nanoscale) level. This study utilizes advanced tools to examine collagen in skin biopsies and lab-grown skin cells, aiming to uncover these previously hidden changes. 

1. Study skin samples 

• Compare skin from people with cEDS, hEDS, and healthy volunteers 
• Use imaging and mechanical tests to see how collagen is structured and how strong it is 

2. Grow skin cells in the lab 

• Use donated skin cells to grow new collagen in lab dishes 
• See if EDS cells make collagen differently and how that affects tissue strength 

3. Develop new approaches to make the EDS collagen more resilient 

What are the goals? 

• Identify biomarkers (measurable signs) of EDS in skin 
• Understand how EDS affects collagen at the smallest level 
• Develop tools that could help diagnose hEDS earlier and more accurately 

Many patients with hEDS wait 10–16 years for a diagnosis. This research could lead to: 

• Faster, more accurate diagnosis 
• Better understanding of the disease 
• New ways to monitor or treat EDS in the future 

You may be eligible if you:

• Are between 18 and 60 years old 
• Have been diagnosed with hypermobile EDS (hEDS) or classical EDS (cEDS)
• Are of Caucasian ethnicity- Can give informed consent 

We are also looking for healthy volunteers with no known skin or systemic conditions. 

If you agree to participate, you may be asked to:

• Undergo a non-invasive skin scan (if in Toronto / GTA area)
• Provide a small skin biopsy (3 mm punch, similar to a mole removal) performed by your physician.
• Share basic information like age, gender, and diagnosis (no names or personal identifiers will be used) 

The biopsy will then be sent to our lab for assessment. Some samples may be used to grow skin cells in the lab to study how collagen is made and organized. 

The skin biopsy may cause mild pain, bruising, or scarring. There is a minimal risk of infection or reaction to local anesthesia. There are no known risks from the non-invasive skin scan.  

You may not benefit directly, but your participation could help improve diagnosis and treatment for EDS in the future.  

Yes. You will receive a $25 gift card to help cover travel or parking costs (wherever you are).  

Your identity will be protected. We will use a study ID number instead of your name. Only approved research staff will have access to the data, which will be stored securely.  

Yes. You can withdraw at any time before your biopsy is processed. After that, we may not be able to remove your data, as it will have been anonymized.