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Introduction: In clinical and translational research, data science is often and fortuitously integrated with data collection. This contrasts to the typical position of data scientists in other settings, where they are isolated from data collectors. Because of this, effective use of data science techniques to resolve translational questions requires innovation in the organization and management of these data.
Methods: We propose an operational framework that respects this important difference in how research teams are organized. To maximize the accuracy and speed of the clinical and translational data science enterprise under this framework, we define a set of eight best practices for data management.
Results: In our own work at the University of Rochester, we have strived to utilize these practices in a customized version of the open source LabKey platform for integrated data management and collaboration. We have applied this platform to cohorts that longitudinally track multidomain data from over 3000 subjects.
Conclusions: We argue that this has made analytical datasets more readily available and lowered the bar to interdisciplinary collaboration, enabling a team-based data science that is unique to the clinical and translational setting.
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http://dx.doi.org/10.1017/cts.2020.501 | DOI Listing |
Alzheimers Dement
September 2025
Department of Population Health Sciences, University of Texas Health Science Center at San Antonio, San Antonio, Texas, USA.
Introduction: We compared and measured alignment between the Health Level Seven (HL7) Fast Healthcare Interoperability Resources (FHIR) standard used by electronic health records (EHRs), the Clinical Data Interchange Standards Consortium (CDISC) standards used by industry, and the Uniform Data Set (UDS) used by the Alzheimer's Disease Research Centers (ADRCs).
Methods: The ADRC UDS, consisting of 5959 data elements across eleven packets, was mapped to FHIR and CDISC standards by two independent mappers, with discrepancies adjudicated by experts.
Results: Forty-five percent of the 5959 UDS data elements mapped to the FHIR standard, indicating possible electronic obtainment from EHRs.
J Investig Allergol Clin Immunol
September 2025
Department of Ophthalmology, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Background And Objectives: Pollen-food allergy syndrome (PFAS) is a frequent comorbidity in individuals with hay fever. Identifying risk factors and allergen clusters can aid targeted interventions and management strategies. Objective: This study characterizes PFAS in patients with hay fever and identifies associated risk factors using the mobile health platform, AllerSearch.
View Article and Find Full Text PDFAlzheimers Dement
September 2025
Alzheimer's Disease Convergence Research Center, Samsung Medical Center, Seoul, South Korea.
Introduction: We developed and validated age-related amyloid beta (Aβ) positron emission tomography (PET) trajectories using a statistical model in cognitively unimpaired (CU) individuals.
Methods: We analyzed 849 CU Korean and 521 CU non-Hispanic White (NHW) participants after propensity score matching. Aβ PET trajectories were modeled using the generalized additive model for location, scale, and shape (GAMLSS) based on baseline data and validated with longitudinal data.
Hum Brain Mapp
September 2025
Tri-Institutional Center for Translational Research in Neuroimaging and Data Science (TReNDS), Georgia State University, Georgia Institute of Technology, and Emory University, Atlanta, Georgia, USA.
Investigating neuroimaging data to identify brain-based markers of mental illnesses has gained significant attention. Nevertheless, these endeavors encounter challenges arising from a reliance on symptoms and self-report assessments in making an initial diagnosis. The absence of biological data to delineate nosological categories hinders the provision of additional neurobiological insights into these disorders.
View Article and Find Full Text PDFJ Appl Res Intellect Disabil
September 2025
Department of Pedagogy, Faculty of Education and Social Work, University of Valladolid, Valladolid, Spain.
Background: Mental health (MH) problems are more common in people with intellectual disabilities (ID), yet under-diagnosis persists, which may be partly due to a lack of appropriate assessment tools. This study presents a systematic review of instruments used to assess MH problems in Spanish-speaking adults with ID.
Method: Following PRISMA guidelines, a search was conducted in Web of Science, PsycINFO, and Scopus using terms related to ID, MH and assessment.