The research for a genetic cause behind anorexia nervosa has been underway for several years. But the challenge has been in engaging a patient population that has been difficult to reach for many reasons. Yet mobile health startup Recovery Record has succeeded in getting people with the condition to use an interactive platform that encourages patients to keep a diary and receive feedback from their therapists.
Research scientist Cynthia Bulik from University of North Carolina at Chapel Hill and Queensland Institute of Medical Research is joining forces with the company to recruit participants for a clinical study to identify genes connected to the disease. The Anorexia Nervosa Genetic Initiative, supported by the Boston-based Klarman Family Foundation, has set a goal of collecting 25,000 DNA samples from patients with the condition by 2016. The data would go to biobanks at University of North Carolina, Queensland Institute of Medical Research and Charlotte’s Helix Project. With a user base of 200,000, Recovery Record will be a driving force behind recruitment, according to co-founder Jenna Tregarthen.
In a phone interview with MedCity News, Recover Record CEO and co-founder Jenna Tregarthen said the advantage of using the company’s mobile platform to recruit patients is that they can generate a continuous feed of potential participants in the rolling study. Additionally they would be tapping a group of patients who have already demonstrated they’re engaged.
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“Down the track, we’re talking about giving users opportunities to supplement their genotype data with phenotype data. We have built the biggest repository of eating disorder patients that exists.”
Although the study was originally restricted to women, after some pushback from men who wanted to be involved, they were also added. The initiative not only shows the convergence between biotech and mobile health but also the broader move towards personalized medicine in mental health. Although there are plenty of challenges associated with pursuing this path, there have been encouraging developments too. If the study succeeds in identifying specific genes involved in the disease, it could point the way toward a way of suppressing or correcting the relevant genes before the disease takes hold.
