“100K” Marathon: A Decades-Long Health Study Makes Its Business Case

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come in the same way, obviously. We definitely want to be ethnically diverse, span different socio-economic backgrounds. Coming up with financing will be a challenge. So as we show successes, we hope it becomes more compelling.

X: You want to start the expansion to 1,000 people next year?

NP: That’s the plan. We funded the first step mostly through philanthropy, and we’re in negotiation with a number of foundations to fund the 1,000, so far it looks good. It’s also possible we’ll have industry partners for the 1,000, but there are lots of moving pieces.

We think there will be a lot of engines of discovery coming out of the data, so you can imagine agreements to make with different players in different industries: Pharma, insurance companies, different healthcare providers who would like to have a stake or understanding. There’s a wide range of possibilities.

The nature of the project will be influenced by the nature of the funding. If it’s all funded by a large national project, for example, the data are going to be made available to qualified researchers. If it’s funded primarily by private philanthropy or companies, there would be different restrictions. The goal is still to have open data, but there might be other constraints around who would be able to access the data.

X: What if a company wants first refusal to use the data in, say, Alzheimer’s disease. Would that be a deal killer?

NP: Not necessarily. I wouldn’t want to prenegotiate, have someone pull this [interview] up and say, “Hey, you said you’d do this!” All those things are negotiable. If someone really wants to come in and develop something to stop Alzheimer’s disease before it happens, that would be a great thing. If someone wants to sponsor 5,000 or 10,000 individuals and in return, they want first right of refusal to be able to develop or have all the information for early stage prevention treatment for Alzheimer’s, that might be worthwhile. Of course it would have to be counterbalanced within the precompetitive space. Would that make another sponsor pull out? There are a lot of details like that to work out.

X: Is there risk of balkanization of the data?

NP: Yes, there’s that risk. I don’t want to say “deal killer,” because there might be compelling reason to do something like that. But it would go against the spirit of what we’re looking for, which is, come in and participate in a precompetitive space.

One thing to realize: We almost never study what we really want in health. Take my own work. We have an NIH grant in Alzheimer’s, and we study the brains of people after they’re dead. What you really want to know is what was leading up to the disease 20 years before, what changed it?

This kind of detailed longitudinal information gives us the substrate on which to identify early transition to disease so we can develop methods to predict and prevent. That’s going to be enormously beneficial to Pharma. It’s worth them thinking about this in a precompetitive way, then compete on who can build the best drug.

We might end up with two different tracks. We could see this becoming a commercial product, some cheaper version of the grand project that people can buy into, monitor themselves in some way. In fact we’ll be launching a wellness company of some type next year. We have funding from venture backers in place. [Editor’s note: He declined to give further details about the venture syndicate or the financing.]

X: You’re entering new territory. How much of the assays and analysis methods do you think you’ll have to create yourselves? How much is off the shelf?

NP: Most of the assays are going to be done with commercial entities because of scale-up and standardization reasons. The analytics, on the other hand, we’re building a lot of them custom to study the data. In terms of data integration, there’s nothing off the shelf, because no one has collected exactly this kind of data.

X: Can a project like this can serve as an anchor for the local biotech economy?

NP: We absolutely view the project as a major economic innovation engine, potentially. One reason for that is [new kinds of] devices. There are data getting integrated, there’s a push for miniaturization and for reducing cost, all that kind of thing. A second reason is the informatics and analytics space. We do plan ultimately to open up the data to certain groups once it’s put together, so they can do their analytics and studies on it.

The health space is another reason. We anticipate a lot of discoveries out of this. One of the big goals of the study is to identify all the early transition states of all the major human diseases. We’re monitoring in detail molecular changes well in advance of when they’re going to happen. You could imagine we’ll learn a lot about early stage diagnostics potentially for diseases. We think a lot of companies will get spun out of this.

X: One of the fascinating things about doing a long-term study like this in a time of radical technological change is that there’s constantly the possibility of unknowns overturning the status quo. How do you factor in those possibilities?

NP: For one, we want to embrace that change, and we want to be driving some of that change as well. We expect to be adopting lots of new technologies along the way, and we’ll be building … Next Page »

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