Marfan Syndrome Clinical Study

During my cardiologist appointment at Children’s Hospital the doctor asked me if I’d like to participate in a clinical study they’re conducting. The title of the study is: Cellular mechanisms underlying vascular dysfunction and aortic aneurysm in Marfan Syndrome. It  involves testing the blood of various people who are either affected with Marfan Syndrome or Loeys-Dietz. By doing this they’re trying to identify potential chemical markers in the blood and tissue that can be used to diagnose and treat MFS earlier than we can now. This study is part of a larger study designed to better understand how the aorta is damaged in patients with MFS.

They’re asking for anyone between the ages of 8-60 who meet the diagnostic criteria for MFS or LDS and would like to participate. The entire thing would involve being measured, weighed and having your blood pressure taken, followed by a physical examination and a detailed cardiovascular evaluation. Approximately 2 tablespoons of blood will be drawn, and an echo and ecg will be performed.

This is all taking place at the Children’s Hospital in Vancouver BC over the next 4 years. The entire thing should take about two hours.

I’m going to participate, so, I guess I haven’t officially said goodbye to the Children’s Hospital yet after all. I’ll be going back to Vancouver for my yearly echo and eye checkup next year and will likely be doing it then. I think it’s really interesting and I’m definitely eager to see the results. If anyone reading this who meets the criteria for MFS or LDS is also interested in being involved in the study just email me at and I’ll give you the information you need.

5 thoughts on “Marfan Syndrome Clinical Study

  1. Pingback: It’s Thursday already? « Connective Tissue Disorders: My Journey

  2. Amazing! You’re the kind of people that help make a difference in the lives of those of us who have these disorders!

    Thank you for subscribing. I am now following you on twitter.
    Best of luck to you and your granddaughter.


  3. Hello – I just found your blog. I am a grandmother to a 6 year old spunky red haired girl who was diagnosed with Loeys-Dietz syndrome in 2010. I have partnered with another family in Montreal – jointly we are the Co-Founders of the Loeys-Dietz Syndrome Foundation of Canada. We are working with the American LDSF to further spread awareness, and network patients with physicians globally. Your site looks very informative and your writing takes on an empowering and supportive nature – which is so helpful to the others who live with medically fragile syndromes. I am looking forward to reading more and receiving further posts – so I shall now subscribe. I have just started to tweet on behalf of the Canadian and American LDSF – so please follow us. Cheers Sandra Topper


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