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23andMe, Community-Based Personalized RxForum Team Up for Parkinson’s Research

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Boston — 23andMe has partnered with PatientsLikeMe, a company that facilitates the sharing of patient outcomes data, to conduct research into Parkinson's disease, the firms said this week.

With the aid of PatientsLikeMe's access to community-based patient groups through its platform for collecting and sharing outcomes data, 23andMe plans to recruit 10,000 people for a large study on Parkinson's disease, the firms said.

The goal of the disease study is to identify the genetic and environmental factors that contribute to the disease, and to gauge the effectiveness of different treatments.

The companies announced they were working together this week here at the Consumer Genetics conference, at which 23andMe co-founder Linda Avey and PatientsLikeMe co-founder James Heywood presented. Sergey Brin, Google co-founder and the husband of 23andMe co-founder Anne Wojcicki, has a mutation that puts him at risk for developing Parkinson's and has donated money to the company.

Heywood estimated that most gene-association studies look at between 1,000 and 2,000 patient samples, and, as a result, do not have enough power. 23andMe's study will aim to show "that if you engage consumers then you can do a study with adequate power, quickly, and at relatively low cost," Heywood told Pharmacogenomics Reporter this week.

Participants in PatientsLikeMe who also want to take part in 23andMe's study will be offered 23andMe's full $399 Personal Genome Service, but will pay only $25.

23andMe last year launched a research initiative, called 23andWe, in an effort to improve quality of patient data that enter into its pharmacogenomics-based clinical trials. Through these research projects, 23andMe aims to generate clinical data to help advance the development of tailored drugs and encourage regulators and medical groups to use genetic information in their medical decision making [see PGx Reporter 06-04-2008].

The Parkinson's disease study, inked though a partnership with the Parkinson's Institute of Sunnyvale, Calif., is the first project under the 23andWe effort. The project plans to use web-based communities, like those formed through PatientsLikeMe, to recruit patients for clinical research.

PatientsLikeMe provides an online forum for patients with illnesses, such as ALS, multiple sclerosis, Parkinson's, HIV, and mood conditions, to share their experiences and provide researchers with real-world data on their diseases. The company aims to create the largest real-world disease information database to help hasten the development of personalized medicine.

Under its collaboration with 23andMe, PatientsLikeMe will be extending the genetics phenotyping tools currently available to its ALS community to the Parkinson's community in July. Patients using PatientsLikeMe's community-based platform to share their own experiences of Parkinson's disease will be able to enter their genetic mutations online and search for others who share the same mutations.

In turn, "the new features will help PatientsLikeMe researchers use new data to evaluate the effects of genetics on variation in the Parkinson's population," PatientsLikeMe said in a statement.

According to Heywood, 23andMe and PatientsLikeMe both use online patient communities, but to different ends. PatientsLikeMe's open online model is focused on disease management, and doctors use the patient outcomes reported on the website in treating patients.

Meanwhile, 23andMe has designed its online community to educate individuals about diseases through gene associations, but it is a more private forum. One has to be a 23andMe customer to participate in its online communities.

Since PatientsLikeMe aims to connect people with certain disease so they can learn from one another, many participants enrolled in the program have chosen to make their information open to the public. In this regard, those PatientLikeMe participants who enroll in the Parkinson's study can also choose to make their genetic information publicly available through the website.

"We have different goals but I think we arrive at the same answer," Heywood said.

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