Abstract
The National Institute of Mental Health strategic plan for advancing psychiatric neuroscience calls for an acceleration of discovery and the delineation of developmental trajectories for risk and resilience across the lifespan. To attain these objectives, sufficiently powered datasets with broad and deep phenotypic characterization, state-of-the-art neuroimaging, and genetic samples must be generated and made openly available to the scientific community. The enhanced Nathan Kline Institute-Rockland Sample (NKI-RS) is a response to this need. NKI-RS is an ongoing, institutionally centered endeavor aimed at creating a large-scale (N > 1000), deeply phenotyped, community-ascertained, lifespan sample (ages 6–85 years old) with advanced neuroimaging and genetics. These data will be publically shared, openly, and prospectively (i.e., on a weekly basis). Herein, we describe the conceptual basis of the NKI-RS, including study design, sampling considerations, and steps to synchronize phenotypic and neuroimaging assessment. Additionally, we describe our process for sharing the data with the scientific community while protecting participant confidentiality, maintaining an adequate database, and certifying data integrity. The pilot phase of the NKI-RS, including challenges in recruiting, characterizing, imaging, and sharing data, is discussed while also explaining how this experience informed the final design of the enhanced NKI-RS. It is our hope that familiarity with the conceptual underpinnings of the enhanced NKI-RS will facilitate harmonization with future data collection efforts aimed at advancing psychiatric neuroscience and nosology.
Highlights
Discovery science promises to transform our understanding of human brain function and the impact of neuropsychiatric illness
The Nathan Kline Institute-Rockland Sample (NKI-RS) is intended to serve as a jumping off point for research that goes beyond individual institutions and has the power to obtain the truly large numbers needed to create normative trajectories in psychiatry
Attainment of normative lifespan trajectories will have a transformational effect on the way in which neuropsychiatric research is conducted
Summary
Discovery science promises to transform our understanding of human brain function and the impact of neuropsychiatric illness. The project is grounded on the principles of open neuroscience, with the goal of prospective, pre-publication sharing of all collected data While it is generally common practice in imaging studies to overlook concerns about the representativeness of datasets (Szklo, 1998; Evans and Brain Development Cooperative Group, 2006), the second phase of the NKI-RS (i.e., the enhanced NKI-RS) has been designed as a community-ascertained sample closely paralleling U.S demographic distributions, minimizing potential sampling biases and maximizing representativeness. In recent years, uncoordinated, multi-center aggregation efforts such as the 1000 Functional Connectomes Project and its International Neuroimaging Datasharing Initiative have emerged as open science solutions to the challenge of large-scale data aggregations (1000 Functional Connectomes Project (FCP), 2009; Biswal et al, 2010; Dolgin, 2010; Milham, 2012) It is against this background that the NKI-RS emerged with the goal of building an institution-based open sharing model.
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