Thursday, June 14, 2007

Patient lists, blogs helping med centers


…In the June 13 WSJ, Laura Landro says Harvard docs were look for a gene mutation in a group of rare blood cancers, and turned to a woman named Joyce Niblack who put the word out on a patient blog she runs and got 300 people to send in mouth swabs and bone marrow samples.

…Later, she also got almost 2,000 people to help Mayo study how rare cancers affected quality of life.

…Online groups not only offer research help, but raise money.

…Some even conduct their own studies!

…Yet another group helped Novartis identify bone deformities in patients taking a drug the company makes.

…To increase these online efforts, a website called e-patients.net has been formed.

…Most patients are not too picky about privacy—just wanting answers and quick!

… Naturally, wires can get crossed—drug companies can link ads to sites. Or side effects or lack of same reported by patients can be suspect because of financial interests.

…If you are interested in finding online cancer resources, go to ACOR.org.

…Anyone know of eye studies for people with neurotrophic corneas?

…HA was just wondering.

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