ArticleMedical care2026
A Roadmap for Accelerating Research in Intellectual and Developmental Disabilities Using PCORnet®.
Article in Medical care, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
1 citing paper in PubMed.
- PCORnet®: Accelerating Patient-Centered Comparative Clinical Effectiveness Research.Medical care · 2026Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
15 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveThis project sought to (1) identify critical gaps in knowledge of intellectual/developmental disabilities (IDD) clinical care and accelerate research by identifying a set of high-priority patient-centered comparative clinical effectiveness research (CER) questions that may be answered using PCORnet and (2) provide recommendations to advance CER for people with IDD (PwIDD).
backgroundNational-scale research is needed to better identify PwIDD, determine appropriate interventions, and evaluate care quality throughout individuals' life course to improve health outcomes and address health inequities.
methodsPCORnet® Network Partners convened Workgroup members who: (1) provided input on research gaps based on their research, clinical work, and/or lived experiences, (2) conducted a literature scan, (3) examined the current capabilities through a data query of PCORnet data resources, (4) surveyed PCORnet® partner sites to describe current infrastructure, (5) identified gaps in knowledge, (6) prioritized unanswered patient-centered CER questions, and (7) characterized infrastructure needs to address CER questions.
resultsSites participating in PCORnet® collectively serve many individuals across the range of IDD conditions, including more than 300,000 individuals with diagnosed autism. There is high utilization of the emergency department (19%-35%) and inpatient setting (8%-31%) across IDD conditions. We identified 3 broad evidence gaps and generated CER questions to address them.
conclusionsOur findings provide insight into the current gaps in knowledge of IDD clinical care, the use of the PCORnet infrastructure to improve cohort ascertainment for IDD CER, and opportunities to enhance the PCORnet® Common Data Model (CDM) to standardize additional patient-centered and IDD-focused data elements for future CER.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.