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Citizen-Scientists for Dupuytren Research

I had a recent correspondence with someone who wanted to discuss the off-label use of Anakinra, an IL1RAP blocker, for her early Dupuytren disease because it had worked so well (off-label) for a problem she had similar to frozen shoulder. It turns out, there are a few small reports of favorable responses to this drug used off-label for unusual joint scarring and for frozen shoulder – both associated with Dupuytren. I was unaware of this until she connected the dots and reached out. It may be a valuable lead, one that’s off the Dupuytren literature radar: there are zero matches for a National Library of Medicine search:
[ale_button url=”*%5BTitle%2FAbstract%5D+AND+(%22interleukin+1+receptor+accessory+protein%22+OR+IL1RAP+OR+Anakinra+OR+Kineret)” style=”light-blue” size=”small” type=”round” target=”_blank”]Search Anakinra and Dupuytren[/ale_button]
even though the drug has been in use for almost 20 years and the same search without “Dupuytren” yields over 5000 citations:
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How could this be? One reason is that Dupuytren biology is complicated and hard to categorize. Dupuytren is affected by genetics, age, gender, and hand activities, and the biology involves immune, inflammation, and injury-repair pathways. Even with the latest tools for text-mining and internet searching, some dots need to be connected by hand. Sometimes it takes the perspective of a non-expert to see new relationships, to escape scientific tunnel vision. Sometimes even the experts could use a hand. Dupuytren has stumped very smart physicians and researchers for almost 200 years.

I’m not suggesting that everyone with Dupuytren badger their doctors into prescribing Anakinra for their Dupuytren. It has potentially serious side effects. It might be exactly the wrong thing to do. There’s no evidence that it prevents Dupuytren progression or recurrence: we need a Dupuytren blood test to be able to tell whether it works, who might benefit, and who might not. What I am suggesting is that Dupuytren is complicated and baffling enough that all thoughts and observations are worthy of discussion, regardless of the source. Your ideas and observations count.

There’s a long history of scientific and mathematical progress made by amateur scientists outside of traditional academia: Sir Isaac Newton, Benjamin Franklin, Charles Darwin, and others. You know these names because they communicated well. However, without communication, even the best ideas can be lost, as reviewed in these opening remarks at the 2010 International Dupuytren Symposium:
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There’s been a decline in citizen scientist visibility over the last 50 years, in part due to the commercialization of research and in part due to funders focusing on large academic centers. As a result, some difficult research areas such as Dupuytren disease have been left behind. The nonprofit independent Dupuytren Research Group exists to fill the gaps in Dupuytren research, the gap between researchers and physicians, the gap between medical doctors and surgeons, the gap between academia and pharma. This challenge is an opportunity for citizen-scientists everywhere. It’s our opportunity, and for those of us with Dupuytren and related conditions, our obligation.

Charles Eaton MD

Interested in supporting or volunteering for the Dupuytren Research Group?
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