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Expanding Data-Sharing Platform, PatientsLikeMe Plans to Add Options for Genomic Disease Studies


Originally published April 14.

By Turna Ray

, the provider of an online health information-sharing platform, plans to use the system to identify families with a history of various conditions who would participate in disease-association studies based on whole-genome sequencing.

Launched five years ago, PatientsLikeMe this week opened up participation to patients with any condition. Previously, the company allowed only patients with a set of 22 common chronic conditions — such as HIV, depression, epilepsy, and Parkinson's disease — to share their experiences with specific treatments on the free website. The company also recently improved the capabilities of its data-sharing platform, allowing patients to add information about multiple conditions and providing mechanisms by which they can measure their quality of life.

Since its launch in 2006, PatientsLikeMe has grown to nearly 98,000 members who have shared data on more than 9,700 treatments and 4,800 symptoms related to chronic conditions. Moreover, around 6,000 PatientsLikeMe members have identified a family history of disease — a fact that will drive the company's involvement in genomics research, co-founder James Heywood told PGx Reporter.

PatientsLikeMe plans to collect samples from families with a history of certain diseases and sequence their genomes through partnerships with non-profits, academics, diagnostic companies, and pharmaceutical firms in order to advance genomics research into these conditions.

"The advent of low-cost whole-genome sequencing opens up new, faster ways of uncovering genetic disease causes in family groups," Heywood said, estimating that with the cost of sequencing a human genome now in the neighborhood of $10,000, an entire family can be fully sequenced for around $100,000.

Research teams have already been able to show that sequencing the genomes of families is a promising strategy for identifying disease-causing gene mutations. For example, researchers led by the Institute for Systems Biology described in Science last year their successful application of whole-genome sequencing to identify mutations behind a Mendelian condition called Miller syndrome and an inherited lung disorder called ciliary dyskinesia in a family of four.

In 2009, PatientsLikeMe entered the genomics research space by collaborating with direct-to-consumer genomics firm 23andMe. Under the research partnership, 23andMe offered its genotype-based testing services at a discounted rate to PatientsLikeMe members who agreed to be part of its Parkinson's disease research (PGx Reporter 06/10/2009).

Now that PatientLikeMe will be able to collect detailed phenotypic data from its growing membership, the company will have more leverage to collaborate with a host of partners with a shared interest in researching the molecular causes of disease and advancing genomic medicine.

Although the company hasn't yet announced any partnerships in this regard, Heywood said PatientsLikeMe is in discussions with a number of players in industry, academia, and the non-profit sector.

Have topics you'd like to see covered in Pharmacogenomics Reporter? Contact the editor at tray [at] genomeweb [.] com.

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