Research Case Studies

Expansion of NIH Toolbox to Infants and Toddlers

The National Institutes of Health awarded Northwestern University a contract to develop the Infant and Toddler Toolbox, an efficient and comprehensive battery of neurodevelopmental measures for use with children ages 1 – 42 months. It will include direct, observational, and parent-report assessments administered via an iPad that address the measurement and feasibility concerns of constituent groups including researchers, clinicians, and patients. The Infant and Toddler Toolbox will be available in English and Spanish and aims to possess superior reliability, validity, brevity, and ease of administration.

Advancing Reliable Measurement in Alzheimer’s Disease and Cognitive Aging (ARMADA)

Developing interventions and treatments for neurodegenerative diseases such as Alzheimer’s disease (AD) depends upon uniform, psychometrically sound measures that capture early indicators of cognitive impairment as well as non-cognitive factors (sensory, motor, emotional) associated with cognitive aging. Funded by the National Institute on Aging, NIH, the ARMADA study (Advancing Reliable Measurement in Alzheimer's Disease and Cognitive Aging) seeks to validate and expand the use of the NIH Toolbox in individuals diagnosed with mild cognitive impairment (MCI) or early stages of dementia associated with AD. Additionally, the study will:

  • Expand the upper end of the age range of the English and Spanish normative groups to include cognitively normal individuals aged 86+.
  • Evaluate the addition of innovative instruments that could improve assessment of change over time and the distinction between age-related cognitive change, preclinical AD, and MCI.
  • Facilitate use of the NIH Toolbox in patient populations and in aging research by ensuring it is a readily available resource with robust user support.

The study is being carried out by the National Alzheimer's Coordinating Center (NACC), and nine universities across the United States, including: Columbia University, Emory University, Massachusetts General Hospital, Mayo Clinic Jacksonville, Northwestern University, University of California in San Diego, University of Michigan, University of Pittsburgh, University of Southern California, and University of Wisconsin in Madison.

Learn more about the ARMADA study>>

Pediatric Imaging, Neurocognition, and Genetics (PING) study creates large data repository, includes NIH Toolbox® Cognition Battery (NTCB)

The NIH Toolbox Cognition Battery was administered to a representative sample of 1,493 children ranging in age from 3 to 20 years. In addition to the NTCB data, standardized high-resolution structural and functional MRI brain images, comprehensive genomic profiles, neuropsychiatric medical histories, and social-emotional health and substance use assessment data collected using the PhenX Toolkit are also available for download. The dataset is available via the PING Data Resource portal along with the study’s methodology and information about the consortium.

A separate data exploration portal is also available to support collaborative analysis and visualization of the dataset.

Validation of the PROMIS®-29 in Persons Living with HIV

Rebecca Schnall and colleagues administered the PROMIS-29 to 1306 persons living with HIV. The PROMIS-29 showed high internal consistency reliability and detected differences in health-related quality of life in those persons who reported an AIDS diagnosis compared to those who did not report an AIDS diagnosis.

Access full article on PubMed>>

Environmental influences on Children’s Health Outcomes (ECHO)

The Environmental influences on Children’s Health Outcomes (ECHO) program is a longitudinal research endeavor supported by the NIH with a mission to enhance the health of children for generations to come. There are several PROMIS and NIH Toolbox updates underway as part of this effort including:

  • Development of PROMIS Early Childhood Parent-Report measures for children ages 1 to 5 years old for constructs such as global health, physical activity, depressive symptoms, anxiety, irritability, curiosity, persistence, positive affect, sleep, and social relationships.  View the List of Parent Proxy Measures>>
  • Development of Data Quality Indices through secondary data analysis of PROMIS and NIH Toolbox data, and subsequently development of a cognitive screener for use to assess self-report capacity.
  • Development of NIH Toolbox cognitive reasoning and executive functioning tasks for children 3 years of age and younger.
  • Creation of NIH Toolbox non-verbal reasoning task for current Toolbox age range.

Symptoms and Function in People with Rheumatoid Arthritis

Clifton O. Bingham, III and colleagues used PROMIS measures to quantify the symptoms and function experienced by people with rheumatoid arthritis across levels of disease activity. PROMIS scores aided patient-provider communication. A series of short patient-targeted videos describes their research aims and findings. Learn more>>