🧵In our previous work on crowdfunding campaigns for unproven stem cell interventions, @LeighGTurner and I noticed two programs - @DukeAutismCtr and @Stemcellspanama - appearing frequently and offering an unproven stem cell therapy to treat children with autism spectrum disorder
These are very different programs. @DukeAutismCtr is based in a world renowned research university a led by well respected researchers. They conduct research on stem cell interventions for ASD and make it available on an expanded access basis - both at a cost to recipients
@Stemcellspanama conducts research as well but operates primarily as a for-profit clinic selling these 'treatments' and hyping them with patient testimonials cellmedicine.com/stem-cell-ther…
In a new article, @LeighGTurner and I reviewed crowdfunding campaigns for stem cell interventions for ASD at both of these facilities. We found some key differences but also that the Duke research seems to encourage treatment in Panama isct-cytotherapy.org/article/S1465-…
Campaigns for treatment at Duke raise more money from more donors despite asking for less support. This is because the cost of participation at Duke is less than purchasing treatment in Panama, roughly $15k vs. $17k not including travel and accommodation costs.
Campaigns for Duke generally made fewer definitive efficacy statements than those for Panama, though the 3 campaigns for expanded access treatment at Duke all included definitive statements of efficacy. This could mean that 'paying' for treatment encourages these claims.
News coverage of and studies by the Duke group often appeared in Panama campaigns to legitimize treatment there, suggesting that the Duke program - and its promotional materials - directly encourage traveling to Panama to purchase treatment.
In two cases these connections were very direct, as with one campaigner who received a stem cell intervention at Duke and was now seeking to go to Panama and another that stated being referred to Panama by staff at Duke.
And this isn't just a Duke to Panama pipeline. Research and promotional materials from Duke appeared in campaigns we identified to purchase treatment at other international facilities.
While we are not suggesting this is the intention of the Duke researchers, our findings show that research, news coverage, and promotional materials of legitimate research activities directly encourage and legitimize participation in the direct to consumer stem cell marketplace
This suggest caution in how researchers promote their findings, speak to research participants, and normalize charging for research participation and expanded access to unproven stem cell interventions. @pknoepfler @CaulfieldTim @anna_wexler @SteveJoffe @ArthurCaplan @pzettler

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More from @jeremycsnyder

24 Aug
Are you a reporter or casual viewer wondering who Natalie Harp @NatalieJHarp , one of tonight’s featured convention speakers is? Then this thread is for you!
The RNC describes Ms. Harp as a Trump campaign board member, entrepreneur, and “ a beneficiary of President Trump’s 2018 Right to Try Act, which allowed her to try experimental drugs to combat her cancer” donaldjtrump.com/media/trump-ca…
Her Right to Try story is how she initially received national attention and her connection to the Trump campaign. After posting her story to her LinkedIn account, which included a critique of Biden’s goal of curing cancer, Fox News picked up on the story foxnews.com/politics/mille…
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