The NKI-Rockland Sample: A Model for Accelerating the Pace of Discovery Science in Psychiatry

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.

Keywords: DTI; brain; discovery; fMRI; lifespan; open science; phenotype; psychiatry.

Figure 1

Assessment protocol for NKI-RS. This figure illustrates all of the assessments that are included in the 2-day enhanced Nathan Kline Institute-Rockland Sample (NKI-RS) protocol. There are five broad domains of assessment: General, Physical, Neurocognitive, Diagnostic, and Behavioral. Within the table are the names, abbreviations, and age ranges in years for each of the assessments.

Figure 2

Sample schedule for adult participants in NKI-RS. This figure illustrates the 2-day assessment schedule for adult participants (ages 18–85 years) in the Nathan Kline Institute-Rockland Sample (NKI-RS) protocol. Abbreviations for the assessments: ANT, Attention Network Task; ASR, Adult Self Report; ATQ, Adult Temperament Questionnaire; BDI, Beck Depression Inventory-II; CAARS, Conners’ Adult ADHD Rating Scales; CASI-AOD, Comprehensive Adolescent Severity Inventory – Alcohol and Other Drugs; CHRLS, Cambridge-Hopkins Restless Leg Syndrome Questionnaire; CFQ, Cognitive Failures Questionnaire; DOSPERT, DOSPERT Risk Taking Scale; GDS-LF, Geriatric Depression Scale-Long Form; OASR, Older Adult Self Report; EDEQ, Eating Disorder Examination Questionnaire; EHI, Edinburgh Handedness Inventory; FTND, Fagerstrom Test for Nicotine Dependence; ICU-Y, Inventory of Callous-Unemotional Traits Youth Version; IPAQ, International Physical Activity Questionnaire; IRI, Interpersonal Reactivity Index; NEO-FFI, NEO Five Factor Inventory; PDI-21, 21-Item Peters et al. Delusions Inventory; PSQI, Pittsburgh Sleep Quality Index; STAI, State Trait Anxiety Inventory; TFEQ, Three Factor Eating Questionnaire; TSC-40, Trauma Symptom Checklist; UCLA-RI, UCLA PTSD Reaction Index for Children and Adolescents; UPPS-P, UPPS Impulsive Behavior Scale; Vineland-II, Vineland Adaptive Behavior Scales Parent Rating Form, Second Edition; WASI-II, Wechsler Abbreviated Scale of Intelligence-II; WIAT-II-A, Wechsler Individual Achievement Test-II-Abbreviated; Y-BOCS, Yale-Brown Obsessive Compulsive Scale; YGTSS, Yale Global Tic Severity Scale; YRBSS, Youth Risk Behavior Surveillance System.

Figure 3

Sample schedule for child and parent participants in NKI-RS. This figure illustrates the 2-day assessment schedule for child and parent participants (children ages 6–17 years) in the Nathan Kline Institute-Rockland Sample (NKI-RS) protocol. Abbreviations for the assessments: ANT, Attention Network Task; ASSQ, Autism Spectrum Screening Questionnaire; ATQ, Adult Temperament Questionnaire; BASC-2, Behavioral Assessment System for Children; CASI-AOD, Comprehensive Adolescent Severity Inventory-Alcohol and Other Drugs; CASS-S, Conner-Wells’ Adolescent Self-Report Scale-Short; CBCL, Child Behavioral Checklist; CBQ, Children’s Behavior Questionnaire; CFQ, Cognitive Failures Questionnaire; CDI-II, Children’s Depression Inventory-II; CEBQ, Child Eating Behavior Questionnaire; CPRS-R-S, Conners’ Parent Rating Scale-Revised-Short; CY-BOCS, Children’s Yale-Brown Obsessive Compulsive Scale; EATQ, Early Adolescent Temperament Questionnaire Parent Report; EDEQ, Eating Disorder Examination Questionnaire; EHI, Edinburgh Handedness Inventory; FTAQ, Fagerstrom Tolerance Questionnaire for Adolescents; ICU-P, Inventory of Callous-Unemotional Traits Parent Report; ICU-Y, Inventory of Callous-Unemotional Traits Youth Version; IPAQ, International Physical Activity Questionnaire; IRI, Interpersonal Reactivity Index; K-SADS-PL, Kiddie Schedule for Affective Disorders and Schizophrenia; MASC, Multidimensional Anxiety Scale for Children; MRI-Q, Magnetic Resonance Imaging Questionnaire; NEO-FFI, NEO Five Factor Inventory; PSQI, Pittsburgh Sleep Quality Index; RBSR, Repetitive Behavior Scale-Revised; SES, Hollingshead Four Factor Index of Socioeconomic Status; SRS, Social Responsiveness Scale-Parent Report; SWAN, Strengths and Weaknesses of Attention-Deficit/Hyperactivity Disorder Symptoms and Normal-Behavior Scale-Parent Version; TANN, Tanner Staging; TFEQ, Three Factor Eating Questionnaire; TSC-C, Trauma Symptom Checklist for Children; UCLA-RI, UCLA PTSD Reaction Index for Children and Adolescents; UCLA-RI-P, UCLA PTSD Reaction Index–Parent version; Vineland-II, Vineland Adaptive Behavior Scales Parent Rating Form, Second Edition; WASI-II, Wechsler Abbreviated Scale of Intelligence-II; WIAT-II-A, Wechsler Individual Achievement Test-II-Abbreviated; YGTSS, Yale Global Tic Severity Scale; YRBSS, Youth Risk Behavior Surveillance System; YSR, Achenbach Youth Self Report.