3 ms·

I completely agree that this can be frustrating. For what it's worth, the data from a research study aren't necessarily going to be clinically informative to a

I completely agree that this can be frustrating. For what it's worth, the data from a research study aren't necessarily going to be clinically informative to a GP or even to a radiologist. Structural MRI data could potentially be interpreted, but the sequences collected for research are still different than what you'd get if you went in for a clinical scan. And if you're interested in having the data for your own purposes, there may still be some liability concerns for the researchers. There's always an agreement to keep MRI data under strict supervision to avoid leaks of personal health information, so providing those data to participants (safeguards or no) could potentially count as a breach of protocol.

bpchaps 10y ago
Agreed on leaking information. It make total sense why they wouldn't want the participants to get access to the data. Though, when I found that out, I did some naive scans to see if they had any public webservers that would have the research information. I didn't see any, but there were a huge number of HIPAA violations where many, many computers with health information were exposed directly to the internet. Their security team told me that it wasn't anything to be concerned about. A HIPAA complaint didn't go anywhere, either. Already spoke with a journalist to try to get some traction on it..