Blog about short term memory research

Short Term Memory Research

Getting rejected already on the pre-data stage

Eugen G Tarnow  March 28 2011 09:25:34 AM
A few months ago I requested anonymized data on the short term memory of Rush Alzheimer's Disease Center patients who died.  I had first been told that if I wanted to use the data to develop a patent, I would not be given access to it.  Recently my request was rejected (yes the "process" took four months!) even though I said I was not going to use it to develop a patent:

"Final comment  : This project was not considered sufficiently meritorious by the review committee.  The analytic plan was not considered acceptable.  The DeKosky reference was not from a Rush study and the Scheff data that is from a Rush study is not available to the RADC nor does the RADC know the IDs that were used in that study as nobody in the RADC worked on that study."

There was no signature and I was told that Dr. David A. Bennett is so busy he should not be contacted, I believe he is the head of the committee.

Today I sent in a FOIA request to the general counsel and quickly got the following answer:  

"The Illinois Freedom of Information Act (“IFOIA”) only applies to the disclosure of public records of Illinois public bodies and does not extend to the disclosure of records by private entities such as Rush University Medical Center.  Furthermore, The Federal Freedom of Information Act (“FOIA”) only applies to federal agencies.   Rush is not required under either the IFOIA or the FOIA or any other regulations to provide you the information you have requested and Rush is unable to comply with your request."

The problem is:  when competitors want to get a hold of data that patients have given a federally supported research center, does it server the patients' interest to deny access?  I think not.