Looking for an old clinical drug trial
October 16, 2014 9:45 AM   Subscribe

I'm trying to find information on a clinical trial that I participated in, around 1990-1991, at the University of Wisconsin - Madison. Is there a resource that would help me with this? I tried ClinicalTrials.gov but it doesn't appear to have records going back that far. Thanks for any help!
posted by El Sabor Asiatico to Science & Nature (3 answers total)
Best answer: I am a medical librarian who specializes in drug information and I answer this question 4x per year. There is no law or rule that requires publication of clinical trials results, so this is not an easy task, may not have an achievable outcome, and is timeconsuming.
It could be published in a journal, the best way to determine this would be to search PubMed, Google Scholar (and perhaps other databases depending in the exact topic) for an abstract describing this study. Search using a combo of drug name, investigator name, location name, and disease name. It may not use all the info at once: "a trial of sytentic acid for liver cancer" or "Madison WI site trial for liver cancer" would be sample titles, so examine things that seem vaguely useful. The data could have been published anytime after 1991 (and could still be published anytime in the future too), so I would not date limit the search. You will need to pay to read the whole article, usually 30-120 dollars apiece, unless you have an affiliation with a library that subscribes.

if not published in a journal, it could be included in drug approval documentation, if the drug was successfully brought to market in the US. Use Drugs@FDA online database to find the documentation, search by drug name. About 60% of approval documents are online in PDF, the others can be requested via FOIA (takes 6 months to a year to get).

It may also not be published at all (sometimes companies do quiet trials and never intend to publish;or the drug was abandoned; or it never got accepted for publicatiom). You will need to contact the investigator and site and company that sponsored it to see if this can be accessed.

All this data will be de-identified, all you will see is info like "20% of subjects had headaches." They may also combine data from multiple sites so you may not see the Madison only data. Just so you are not expecting to see your name, photo, or personal experiences written out!(sometimes people assume this is what it will include.)

This is my quick response on tablet (sorry for typos). If you cameto my library, we would talk a lot longer, as this is not an easy task and likely will take 10-50 hours of search time. I am traveling today but if you memail me details on the study, I can give you some more specific advice on keywords, databases, etc, on Saturday.
posted by holyrood at 11:05 AM on October 16, 2014 [2 favorites]

Btw I made up syntetic acid, that is not a real drug or substance to my knowledge, it just sounds very scientific.
posted by holyrood at 11:06 AM on October 16, 2014

I wonder if you might approach this from a different direction by contacting the University of Madison's Institutional Review Board. It's a slim chance, because chances are the records from that long ago don't have to be kept, and if they were kept, are likely in boxes somewhere rather than a nice searchable database. But if you have any details - year of participation? condition being studied? any recollection of what kind of tests were involved? - there's some chance they can help identify what study you may have been in or at least who the researcher may have been, and then put you in touch with the researcher if he or she is still there.

If the compliance office where I work got this request I think we would typically not be able to answer it because none of us were here that long ago, the records are spotty or nonexistent, etc. But there's some chance, if it were in a very specific research area or had some unique feature, that we might be able to point you at the researcher, who could then direct you to any relevant publications.
posted by Stacey at 11:22 AM on October 16, 2014

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