Intellectual and Developmental Disability, Diagnosed


Variable Name

dx_idd

Created

2026-02-05

Last Modified

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dx_idd.csv (173.28 KB)
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Data Model

Abstract

This concept set is intended to identify patients with intellectual and developmental disabilities to define a study cohort.

Affiliation(s)

PEDSnet Data Coordinating Center

Funder(s)

Provenance

The concept set was created for the "Adverse Hospital Events in Pediatric Patients with Intellectual and Developmental Disabilities" study, developed from the IDD Interest Group.

Description

The code set was developed to identify a study cohort of patients aged 5 to < 21 with intellectual and developmental disabilities. ICD codes were obtained from a prior publication supplemented with clinician suggestions, and mapped to SNOMED codes. All codes were reviewed by a clinician.

This codeset and its previous version both contain codes related to developmental disabilities. Version 1 contains more general codes for language and neurodevelopmental delays, while this version contains many more codes related to related to chromosomal or genetic diagnoses.

Development Code

https://github.com/PEDSnet/idd_hosp/blob/main/code/driver_codesets.R

Vocabulary

Medication Classification Level

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Data Source

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PEDSnet Production Database
Created:2026-01Affiliation:PEDSnet Data Coordinating Center
PEDSnet production database containing de-identified aggregate electronic healthcare information for ten contributing pediatric healthcare institutions. This database corresponds to Version 6.0 of the PEDSnet data model.
##### **Learn about how to access PEDSnet data for research [here](https://pedsnet.org/database/access-to-data/) or, submit a [collaboration request](https://pedsnet.org/work-with-us/collaboration-request/).**

Related Phenotype

Related Person

Related Study

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PEDSnet Infrastructure
Affiliation:Children's Hospital of Philadelphia
The infrastructure project secures funding to ensure the continuation of PEDSnet centralized data management services, where data from contributing institutions is managed, transformed, undergoes data quality protocols, and is made openly accessible and disseminated to researchers and stakeholders. PEDSnet is a PCORnet Clinical Research Network (CRN) focused exclusively on improving child health through patient-centered outcomes research. PEDSnet produces reusable and novel governance, informatics, scientific and training resources. The infrastructure project secures funding to ensure the continuation of PEDSnet centralized data management services, where data from contributing institutions is managed, transformed, undergoes data quality protocols, and is made openly accessible and disseminated to researchers and stakeholders.

Related Concept Set

Related Code

Related Publications

Creative Commons license

a CC-BY Attribution 4.0 License.
Except where otherwised noted, this item's license is described as a CC-BY Attribution 4.0 License.

Cite this Concept Set

Hirabayashi, K. (2026, February). Intellectual and Developmental Disability, Diagnosed. [Concept Set]. PEDSpace Knowledge Bank. https://doi.org/10.24373/pdsp-149.2

Version History

Now showing 1 - 2 of 2
VersionDateSummary
2*
 2026-07-08 14:59:22
More comprehensive codeset, including codes related to chromosomal and genetic diagnoses.
1
 2024-06-10 15:03:33
* Selected version