Improving the quality and quantity of clinical and translational research statewide: An application of group concept mapping.

Introduction: Advance Clinical and Translational Research (Advance-CTR) serves as a central hub to support and educate clinical and translational researchers in Rhode Island. Understanding barriers to clinical research in the state is the key to setting project aims and priorities.

Methods: We implemented a Group Concept Mapping exercise to characterize the views of researchers and administrators regarding how to increase the quality and quantity of clinical and translational research in their settings.

Advance-CTR: Statewide Infrastructure to Improve Health in Rhode Island through Clinical and Translational Research.

The universities, hospitals, government agencies, and community organizations in Rhode Island (RI) are well-positioned to bridge gaps between basic and clinical science. RI's manageable size, population demographics, and organizational structure present opportunities to test and implement impactful, transformative clinical and translational research. However, the state's resources had not been optimally coordinated to develop a multi-institutional, clinical and translational research infrastructure to improve clinical practice effectiveness and impact health care in RI.

Clinical and Translational Research in Rhode Island: Results of a Needs Assessment Survey.

The Advance-Clinical and Translational Research (CTR) program was established in Rhode Island in May of 2016 with an IDeA Program Infrastructure award to collaborating institutions: Brown University, the University of Rhode Island, with the Lifespan, Care New England and Providence VA Medical Center healthcare institutions and the Rhode Island Quality Institute. To support programmatic planning, the Tracking and Evaluation Key Component Activity (KCA) of Advance-CTR developed and implemented a needs assessment survey to identify the obstacles to clinical and translational research at the participating institutions. We describe the methods used and the responses, which identified needs for study design and data analysis support.

Electrophysiologic features of ulnar neuropathy in childhood and adolescence.

Objective: To analyze patterns of nerve injury in pediatric ulnar neuropathy (PUN).

Methods: Retrospective analysis of 49 children with PUN.

Results: Sensory loss in digit V was the prevailing complaint (89%).

Rasch analysis of the Pediatric Evaluation of Disability Inventory-computer adaptive test (PEDI-CAT) item bank for children and young adults with spinal muscular atrophy.

Introduction: In this study we evaluated the suitability of a caregiver-reported functional measure, the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), for children and young adults with spinal muscular atrophy (SMA).

Methods: PEDI-CAT Mobility and Daily Activities domain item banks were administered to 58 caregivers of children and young adults with SMA. Rasch analysis was used to evaluate test properties across SMA types.