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Research Tips

Update May 9, 2002

Good Research Tools:

http://www.nih.gov/news/stemcell/execsummary.pdf - Thorough discussion of Stem Cell Research

http://www.btinternet.com/~randy.ramage/aamdsglossary_folder/index.html - AA glossary courtesy of Randy Ramage

In hopes this may save you some time in learning how to research an illness  (not just AA).  I had been diagnosed for six months and had become frustrated by the lack of good medical information online and walking out of the gift shop one day asked an MD if there was a medical library at the U or R and could I use it.  He said "yep - in this building and I don't know if you can use it or not".  

We found the Miner Library at University of Rochester which was indeed in the same building as Strong Memorial Hospital. Turns out it is indeed open to the public and certainly to patients.  There was a research person (thanks Mary Ellen!) who helped get us  on the right track.  She showed us how to enter OVID which is an indexing tool, how to find clinical trial http://clinicaltrials.gov and other useful tools. 

We then went off on our own a bit and discovered a bunch of PC's with local indexing access and internet access. We could search for an article in medline (the private version of http://pubmed.com and then literally walk into the stacks (a Room Full!) of medical journals, pick out the one we wanted, make a copy and voila - some fantastic information.  

The library also has all the latest books on each discipline we wanted to research - immunology, hematology, etc.  And a couple of really cool things made this site worthwhile.  I could not remember the clinical trials address above so I logged on to http://aplasticcentral.com checked the links I had posted earlier and voila - there it was.  I then did a search on T cell depletion and came up with a link that I added to the links.  WOW - this really works.  We are getting all the information we need including current full text articles in a matter of minutes! 

My guess there is a similar library where you are being treated or in a major university near you.  Use it to find out everything you can about your illness.  

Happy Hunting

Bruce

 


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