Interactive Population Insights

Intellectual and Developmental Disability

This interactive visual report characterizes adults and children with intellectual and developmental disabilities (IDD) who received healthcare services at sites participating in PCORnet between January 1 - December 31, 2025. Download the data tables for additional data.

pcornet_fnb_10sep2026_idd-condition
Download the IDD
Data Tables

To ensure accessibility, data visualizations feature high color contrast and downloads are provided in tabular format.

Network queries are developed, distributed, and processed through the PCORnet® Front Door, which is the point of contact that manages all data network requests.

Overview

This report describes the results of a data query of the patients with IDD conditions with at least 1 face-to-face encounter and a recorded diagnosis code (e.g., ICD-10) at a health care setting across PCORnet between January 1 – December 31, 2025. The query used a 5-year “look-back” period between January 1, 2021 – December 31, 2025, to identify patients with diagnosis codes for IDD conditions reflected in the electronic health record. The IDD conditions explored in this query were grouped into the following cohorts:

  • Any Intellectual and Developmental Disability (IDD)
  • ADHD
  • Autism Spectrum Disorder
  • Cerebral Palsy
  • Codes Defining Severity of IDD (i.e. Mild, Moderate, Severe)
  • Congenital Malformations of Brain
  • Developmental Delay
  • Down Syndrome
  • Failure to Thrive
  • Fetal Alcohol Syndrome
  • Fragile X Syndrome
  • Hypoxic-Ischemic Encephalopathy
  • Learning Disability
  • Muscular Dystrophy
  • Neonatal Stroke
  • Spina Bifida
Demographics

Demographic characteristics of the patient population include:

  • Age
  • Ethnicity (Hispanic or Non-Hispanic)
  • Race
  • Sex
Geographic

Geographic characteristics of the patient population include:

  • Area Deprivation Index (ADI)
  • Rural-Urban Commuting Area (RUCA) Codes
Care Setting

Characteristics of the care setting utilized by the patient population include:

  • Ambulatory Visit
  • Emergency Department Visit
  • Emergency to Inpatient Stay
  • Inpatient Hospital Stay
  • Non-Acute Institutional Stay
  • Observation Stay
  • Telehealth
Payer

Payer status characteristics of the patient population include:

  • Medicare
  • Medicaid
  • Private
  • Other
  • Missing
Co-occuring Conditions

Selected co-occurring conditions for this patient population include:

  • ADHD
  • ADRD
  • Autism Spectrum Disorder
  • Cerebral Palsy
  • Chronic Failure to Thrive
  • Chronic Seizure
  • Codes Defining IDD (i.e. Mild, Moderate, Severe)
  • Congenital Heart Disease
  • Congenital Malformations of Brain
  • Developmental Delay
  • Down Syndrome
  • Failure to Thrive
  • Learning Disability
  • Low Birth Weight
  • Muscular Dystrophy
  • Spina Bifida
  • Torticollis
Treatments and Services

Selected treatments and services received by the patient population include:

  • ADHD Medications
  • Antibiotic
  • Antidepressants
  • Anti Diabetic Medications
  • Anti Epileptic (Benzodiazepines)
  • Anti Epileptic (Non-Benzodiazepines)
  • Anti Hypertensive Medications
  • Anti Obesity Medications
  • Anti Psychotics Medications (First and Second Generation)
  • Asthma Related Inhalers
  • Audiology
  • GLP-1
  • Neuropsychotherapy Evaluation
  • Occupational Therapy (Initial and Re-Evaluation)
  • Opioids
  • Oral Exams
  • Physical Therapy (Initial and Re-Evaluation)
  • Physical Therapy/Occupational Therapy Treatments
  • Psychological Evaluation/Psychotherapy
  • Reflux Medications
  • Speech Therapy
  • Vision Services
  • Wellness Visit

Explore the Data

Use the dropdown filter menus below to explore the results by cohorts of interest.

Demographics

Please note that these visualizations represent people receiving care at these institutions and should not be interpreted as a measure of population-level prevalence.

To get started, please choose a "Cohort" from the drop-down menu below.

Geographic

Please note that these visualizations represent people receiving care at these institutions and should not be interpreted as a measure of population-level prevalence.

To get started, please choose a "Cohort" from the drop-down menu below.

Care Setting

Please note that these visualizations represent people receiving care at these institutions and should not be interpreted as a measure of population-level prevalence.

To get started, please choose a "Cohort" from the drop-down menu below.

Payer

Please note that these visualizations represent people receiving care at these institutions and should not be interpreted as a measure of population-level prevalence.

To get started, please choose a "Cohort" from the drop-down menu below.

Co-occurring Conditions

Please note that these visualizations represent people receiving care at these institutions and should not be interpreted as a measure of population-level prevalence.

To get started, please choose a "Cohort" from the drop-down menu below.

Treatments/Services

Please note that these visualizations represent people receiving care at these institutions and should not be interpreted as a measure of population-level prevalence.

To get started, please choose a "Cohort" from the drop-down menu below.

AUTHOR

Coordinating Center for PCORnet®
LAST REFRESHED

August 19, 2026

Cite this data report
Data available in this report are meant to illustrate the capabilities of PCORnet. You can cite this data report for publications or proposals, or contact the PCORnet® Front Door for a more comprehensive data request.

Sample citation: The National Patient-Centered Clinical Research Network (PCORnet®). Updated  July 23, 2026. Accessed August 12, 2026. https://pcornet.org/data/population-insights-cancer/

Funding Statement

The report was funded by PCORI through PCORI Awards (RI-DCRI-01-PS11, RI-VUMC-01-PS10, RI-DCRI-01-PS10, RI-OCHIN-01-PS8, RI-MISSOURI-01-PS8 , RI-CORNELL-01-PS8, RI-FLORIDA-01-PS8, RI-PITT-01-PS8, RI-CHOP-01-PS10, RI-LPHI-01-PS8, RI-VUMC-01-PS9).

The statements presented in this report are solely the responsibility of the author and do not necessarily represent the views of other organizations participating in, collaborating with or funding PCORnet or of PCORI.

PCORnet® is intended to improve the nation’s capacity to efficiently conduct patient-centered health research, particularly comparative clinical effectiveness research (CER), by providing a large, highly representative network of health data, research expertise, and patient insights. PCORnet has been developed with funding from the Patient-Centered Outcomes Research Institute® (PCORI®).