[Med-privacy] "EMR vendor to share patient data with genetics research firm"

[peter marshall]

Healthcare IT News
EMR vendor to share patient data with genetics research firm
By  Richard Pizzi, Associate Editor
	
03/20/08
	
Perlegen Sciences, Inc., a company exploring the clinical application 
of genetic research, plans to collaborate with an undisclosed 
electronic medical records vendor to identify and develop genetic 
markers that predict how patients are likely to respond to specific 
medical treatments.

Under the terms of the agreement, Perlegen, based in Mountain View, 
Calif. , will have exclusive access to the EMR vendor's database of 
U.S. records for the purpose of assessing and selecting patients from 
whom appropriate genetic samples could be collected.
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The EMR provider will earn subscription and program fees, as well as 
"significant" participation in milestone payments tied to the 
successful launch of new diagnostic tests resulting from the 
collaboration.

According to Rob Middlebrook, Perlegen's chief corporate development 
officer, Perlegen will receive an ownership position in the EMR vendor 
tied to the achievement of certain revenue levels.

Middlebrook declined to identify the EMR vendor, saying they prefer to 
keep the information proprietary. The company is also not releasing 
detailed financial terms of the deal.



The two companies intend to mine data from the EMR's information 
warehouse, which contains clinical treatment and outcome data on 
roughly 4 million patients, in order to identify subsets of patient 
records which meet inclusion and exclusion criteria.

Perlegen officials say each patient's privacy rights will be protected. 
The firm says it will work with the selected patient's individual care 
provider to obtain DNA in a HIPAA-compliant, IRB-approved manner.

Company officials say they won't have access to patient identities, but 
instead will receive de-identified patient records, which can be 
re-identified only by participating healthcare institutions.

Once re-identified, participating patients and physicians will receive 
financial compensation for providing samples for further analysis.

Perlegen officials say the goal of the program is to help better 
understand the genetic influences important in predicting 
patient-by-patient responses to drug therapy.



"We're focused on treatment response to existing drug compounds," said 
Middlebrook. "We will be working on drugs for the treatment of type 2 
diabetes and we're also doing a study of hepatitis C. "

Initial diagnostic programs have already begun, Middlebrook said. 
Perlegen has selected patients and begun DNA collection, with 
additional sample collection programs scheduled to begin in the coming 
months.

The dawning field of "personalized medicine" relies on the discovery 
and validation of genetic markers to help predict how patients might 
respond to specific medical treatments. The discovery of these markers 
has been delayed by the lack of appropriate DNA sample sets linked with 
clinical information.

Perlegen executives claim that, by gaining access to a dataset of 
long-term patient records mapped into a standardized, searchable data 
structure, the company can identify patients from whom clinically 
meaningful DNA samples could rapidly be obtained.

"Our initial diagnostic programs are aimed at helping to guide 
physicians in prescribing treatments that impact tens of millions of 
patients each year, costing billions of dollars," said Middlebrook. 
"This collaboration removes one of the greatest obstacles to creating 
these revolutionary predictive tests - the lack of access to meaningful 
clinical samples based on treatment and outcomes data from millions of 
patients."