Rare disease patient community and Mayo explore trial with far-flung patients

SPM member John Novack of Inspire.com sent this, about a project some members of an Inspire patient group created. They got the Mayo Clinic to explore whether a clinical trial can be done in a very unconventional setting: across the internet, instead of within one institution. The pilot project worked, and Mayo is rolling out a larger trial.

An Aug. 30 Wall Street Journal article, When Patients Band Together, details how women with a rare heart defect, spontaneous coronary artery dissection (SCAD), leveraged the online WomenHeart Support Community on Inspire to spur the Mayo Clinic to launch new clinical  research.

Sharonne Hayes, the Mayo cardiologist leading the project, said the social network “is a catalyst and it allows us (to) gather a critical mass of patients to learn more about this disease.” On the online community, the far-flung SCAD survivors routinely refer to each other as “SCAD sisters.”

Did it work? I grabbed this excerpt:

Tuesday, results of a pilot study conducted by researchers at the Mayo Clinic are being published online by the journal Mayo Clinic Proceedings. The study, which involved 12 SCAD patients from the message board, found that it is feasible to collect data and medical records from patients with different doctors and from far-flung locales.

The study is a precursor to a much larger trial the clinic launched two weeks ago involving as many as 400 SCAD patients and an equal number of their close relatives.

You go, SCAD sisters! Go E!



Posted in: research issues | Why PM




6 Responses to “Rare disease patient community and Mayo explore trial with far-flung patients”

  1. Susannah Fox says:

    Thank you for posting, Dave, so this moment isn’t lost (and before the article disappears behind a paywall). Go SCAD sisters indeed!

    When I first read the story last night (thanks to a tweet from Emily Hackel) there was just one comment, and it was off-topic. Now there are 13 comments (and counting) each one more interesting than the last. What the reporter didn’t have room to fit in the story, or didn’t think to include – voila! In the comments. The one thing I’d add is a link to the Nature Biotechnology article so interested readers can find it:


    I reflected on this wonderful phenomenon of public access & comments today as I read two other articles:

    The Annals of Extreme Surgery (New York Times)

    Cancer Trials vs. the Real World in the United States (Annals of Surgery)

    The NYT article is publicly posted (as long as you are a subscriber OR haven’t exceeded your free limit for the month) and allows comments. An extraordinary debate is happening, for all to see and learn from.

    The Annals of Surgery article is behind a paywall (any subscribers reading this? Does this publication allow comments?). I will quote Gilles Frydman, who alerted me to this important article: “It’s absurd that an article with public health implications, using gov. funded data is closed to the public.” And as Sally Church wrote, “Medical publishers are missing out on so much interaction by not allowing comments!”

    Thanks again for linking to the SCAD article. Let’s keep learning – together.

  2. Laura says:

    Thanks for covering this. Yes, we SCAD-sisters have banded together online; since it’s such a rare occurrence, most of us don’t know another SCAD survivor in person.

    Our doctors tell us how rare they are and how lucky we were to have survived. We get home from the hospital all worried and scared, then start researching SCAD and find each other online, and support each other that way.

    These women, from all corners of the US, the UK, Canada, New Zealand, and more — are my friends, as much or more so as anyone I’ve met in person, and I’m grateful to them all for the tremendous support and understanding they provide.

    • Hi Laura!

      I have a great interest in communities for rare diseases and I am always looking for exceptional elements found in these communities that could be reproduced in other rare cancer groups.
      Do you think SCAD-sisters is doing exceptional things for its members that we should know about, beyond the Mayo-sponsored pilot/clinical trial?

      • Laura says:

        Hi Gilles,

        I don’t know how the rare cancer groups are versus other online communities, but I’ve found that the WomenHeart forum in general, and the sub-group of us SCAD sisters in particular, is rather atypical for an online group — we don’t have trolls, we don’t have a lot of the nasty snarking that goes on in other online places because people feel comfortable behind their made-up screen names, etc.

        It’s just a very warm, welcoming place. We may not always agree with each other, but we don’t get the stereotypical flame wars or other stuff like that. See this xkcd comic for what I mean as an example of what we DON’T have:

        And having been online in some form or other since the early 1990s (I remember typing college papers and printing them in the basement of the computer center, using UNC’s mainframe, and they’d come out on green lined paper), I have to say, that’s a very rare thing indeed. It really and truly is a community, albeit not a geographically-bound one.

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