We talked briefly with Paul Wicks, who heads research and development for the data-sharing site, PatientsLikeMe (PLM). The online community holds detailed “de-identified” health information on some 60,000 patients with diseases from ALS to depression. And the site lets patients share information they report about their illness. It also helps them contribute data directly to its research. Scientists benefit – especially those studying orphan diseases like ALS – from a perhaps unparalleled database that can shed light on the outward behavior, progression and existing treatments for the disease. We phoned Wicks at PLM’s office in Cambridge, Massachusetts. ALERT: How many ALS patients are in your database so far? WICKS: We have 4,470, though that will be outdated as soon as this appears online! All told, PLM has contact with some 60,000 people with different diseases. ALERT: And there’s privacy? WICKS: Yes. We encourage patients to share information such as symptoms and treatments, but not their names, addresses, phone numbers or email addresses. Patients can view profiles of others within the community — the patients like me part. And they need a login to get access. But about 20 percent also choose to make their information public for anyone on the internet to learn from. ALERT: So you’re assisting Packard in ways our director, Jeff Rothstein, calls “a fantastic collaboration, a great asset.” You’re helping us find familial ALS patients to donate skin cells to derive human ALS cultures. WICKS: That’s right. I feel especially close to this project because I personally see the need. I’m an ALS researcher by training, a neuropsychologist. When I was working on my Ph.D. in England, I tried to find patients with SOD1 mutations. It took me three years to find a dozen people. I literally drove thousands of miles to talk with them. But the effort didn’t come without a toll. The ethical review process in my country was then very slow, and by the time we got the proper approval, a number of the patients had died. ALERT: And because you were dealing with a familial form of ALS. . . WICKS: It was wrenching at times. You’d be invited into the homes of lovely people and offered tea, but when you’d look around at their healthy, cheerful children, it was hard to dismiss their risk. With the dominant autosomal SOD1 gene we studied, there’s a 50-50 chance your offspring will have ALS. That can’t help but give us a real sense of urgency. ALERT: Talk about the emails. WICKS: Because we collect medical data about our members, we know their family history and, in some cases, their genetic mutations. That means we can send out a really targeted message. Normally what happens in situations like this is a blast e-mail to all patients. But the 95 percent who can’t take part find it jarring to get a request when they can’t take part. PatientsLikeMe lets us reach people who’d be most helpful without disturbing others. And because these stem cells will be readily available for research for a long time, you’re also creating a lasting resource for science. It’s a fine contribution these patients are making. ALERT: Thanks very much for talking with us. | 
