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BirthDefectsReporting FHIR IG Proposal

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Birth Defect Reporting FHIR IG

Owning work group name

Public Health

Committee Approval Date:

WG approval: May 16 2019

FMG approval: May 22 2019

Clinical SD approval: June 3 2019

Publishing Lead

Craig Newman -

Contributing or Reviewing Work Groups


FHIR Development Project Insight ID

Project ID 1532

Scope of coverage

This proposal covers the reporting of birth defects for human patients up to the age of 12 years in the United States. Reporting is from a provider in either a hospital or ambulatory location to a jurisdictional birth defect registry. Reporting may happen at the time of birth or any time afterwards if a birth defect is diagnosed later. Content for reporting includes demographics and vital records content for the individual, family/social context, pregnancy/delivery information and also specific clinical content related to the birth defect(s) for the patient.

Content location

TBD - is there a suggested github repository pathway?

Proposed IG realm and code


Maintenance Plan

Altarum works with the state of Michigan to develop and support their birth defect registry. This association is expected to continue after the publication of the IG.

Short Description

The purpose of the Birth Defects Reporting FHIR IG is to provide guidance on reporting birth defects, either at the time of birth or afterwards, from a provider to a jurisdictional birth defects registry. The IG covers reporting requirements from both the ambulatory and hospital contexts.

Long Description

The scope of this project is to produce and ballot a Standard for Trial Use (STU) Fast Healthcare Interoperability Resources (FHIR) implementation guide (IG) for use in reporting of birth defects in the U.S. to jurisdictional birth defect registries. Automation of the reporting process adds efficiencies that dramatically improves the efficacy of collecting data related to birth defects and patient outcomes.

The clinical content being exchanges will be derived from a birth defects domain analysis model (which itself is an extension of a vital records domain analysis model). Content areas include patient demographics, related persons (mother, father), labor and delivery events and patient conditions (birth defects). Reporting is covered not only at the time of birth, but also through later stages of childhood.

Involved parties

The project is being sponsored by the state of Michigan but will include input from a variety of other jurisdictions as well as Health IT developers.

Expected implementations

The state of Michigan is expected to implement this IG in conjunction with healthcare organizations in the state.

Content sources

The Birth Defects domain analysis model will be the primary source of clinical content. The development of this DAM will consult the existing Vital Records DAM and reuse components where possible. Where requirements overlap, the US Core FHIR profiles will be used to directly or as the basis for developing unique birth defect reporting profiles.

Example Scenarios

Example scenarios include: 1) reporting of a newborn birth defect at the time of birth from a hospital context 2) reporting birth defect identified later in life (during childhood) from an ambulatory context

IG Relationships

This IG may overlap in patient-centric content with the vital records death reporting IG. Where possible, the two IGs will be harmonized. The IG will also use R4 US Core profiles where possible.


Work on the IG will begin in early 2020 The anticipated ballot target date is September 2020 (meeting the standard FHIR IG deadlines for that ballot cycle) Ballot reconciliation will happen in the fall of 2020 A publication date is expected in late 2020 or early 2021

When IG Proposal Is Complete

When you have completed your proposal, please send an email to

FMG Notes