Mood Patient-Powered Research Network - Phase I

Major depressive disorder (MDD) and Bipolar Disorder (BP) are among the top 10 causes of disability worldwide. The lifetime risk for MDD is 12% for men and 25% for women, and for BP it is about 2-4% for men and women. With yearly costs of about $100 billion and $151 billion respectively, MDD and BP are associated with decreased earnings, increased health care utilization for medical conditions, and premature death, with up to 25 years of lost life. After multiple sequential interventions, about 50% of MDD patients and 30% of BP patients achieve remission. Nevertheless, 90% can experience relapses within six months and recurrences thereafter. Inter-episodic subsyndromal symptoms including cognitive dysfunction also persist and render many patients incapable of functioning or holding a job. Furthermore, while neuroscience has determined that mood disorders result from dysregulated brain circuits, people with mood disorders continue to experience stigma. Therefore, many patients with mood disorders feel disenfranchised and unheard, and they would welcome the opportunity to become more empowered, and engaged in research collaborations to improve their lives. 

The Mood PPRN centers on patients as collaborators to form a new patient-researcher-clinician community. It will provide opportunities for patients to participate in comparative effectiveness research and engage them in all stages of research—from setting priority questions, to governance and oversight of studies, to dissemination of results—with the ultimate goal of enhancing their sense of empowerment and agency through unprecedented collaboration with the research community. 

Our ultimate goal is to improve the lives of patients with mood disorders through prospective comparative effectiveness trials embedded within routine care and through patient reported outcomes as well as outcome data from electronic medical records. The network can be used as a platform to determine the best interventions for mood disorders that lead to the best patient-defined relevant outcomes.

The main aim is to bring together at least 50,000 patients with mood disorders who will be willing and able to participate in prospective comparative effectiveness studies and provide longitudinal data through electronic medical records and patient-recorded outcomes. We will collaborate with multiple mood disorder advocacy groups to provide opportunities for patients to volunteer. The Mood PPRN will form a foundation to advance our understanding of the biology of mood disorders for personalized care.