I’m posting a review request for the Resilience Project Study, which is applying for project approval on Open Humans. This project is part of an IRB-approved study led by Jason Bobe at the Icahn School of Medicine at Mount Sinai, and we’ve received documentation of this IRB approval.
The project would like to launch their app in the Apple app store and would like a quick review turnaround, if possible.
Should this project be visible and available for all Open Humans members to join?
Description: The Resilience Project aims to discover why some people are more able to overcome challenges to their health and escape disease. These people are “resilient.” Finding and studying resilient individuals could pave the way to new insights about health, better disease prevention strategies or new treatments.
Is the documentation of the IRB approval something that can be shared on the project page? (I recall that there are factors that sometimes make sharing anything related to the actual IRB documents tricky…)
It sounds like a nice feature to add “uploaded copy of IRB approval” as an optional feature for projects! Maybe it could be part of a more general desire for projects sharing some associated files (e.g. some aggregate data sets individual data could be compared against).
Maybe I could post the document here, or a screenshot image, I should doublecheck with Jason if that’s OK.
@beau Here is the most recent approval letter from the IRB.
there is a companion website for the project and the studies that are related to it, but it is behind a firewall until launch. FWIW Open Humans does not appear on the website.
Its embedded in one rather narrow aspect of one channel, so I think it makes sense from a design perspective (“progressive disclosure” is a general principle we’re using) to surface the connection in that context. Initially, Open Humans is being used in 1 narrow capacity:
Our study has several channels. An iOS app is one channel. For users of the app that also enroll in the Resilience Project Study that want to add existing genomic data to the study, we invite them do so via OH. A user with an open humans account can do an oauth handshake that allows their existing genetic data to be added to the Resilience Project Study. Thats it for now.
I also vote for approval. I think the presence of IRB oversight is a fair proxy. (Albeit imperfect! But projects can always have new reviews initiated, if a concern is ever raised.)
Thank you @gedankenstuecke & @beau! I added a note to an existing GitHub issue that IRB approvals are a type of project-associated file that might be useful to support in the site.
And, in the interests of enabling the app to be released in the app store, I’ll consider this approved.
for approving this project!