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Research draft

congenital heart disease

vr.tr.congenital-heart-disease · XCT.STA

Let an agent route urgent symptoms in babies, children and adults to emergency care, give general sourced information on congenital heart disease, screening and adult services, and refer individual questions to specialists.

Thing Registry Cross-cutting context

Research draft, second pass

A second pass drafted this model: the structure a model of this thing needs, and what is known about it in the world. The line under this one says how the second half was obtained - researched against sources, or recalled without web access, in which case nothing here was read anywhere and every claim is a lead to verify. Unreviewed either way.

written by Claude from model knowledge without web access - no source was read, every claim is a lead to verify

Researched by: Claude

Purpose and description

Let an agent route urgent symptoms in babies, children and adults to emergency care, give general sourced information on congenital heart disease, screening and adult services, and refer individual questions to specialists.

A structural abnormality of the heart or great vessels present from birth, such as septal defects, valve stenoses, tetralogy of Fallot or congenital heart block; it affects about 1 in 100 births, ranges from minor to life-threatening, and many people now live into adulthood with specialist care.

What it is for: A group of conditions relevant to newborn care, paediatrics and lifelong cardiology.

It can be recognise urgent warning signs in babies and children; find information on screening and diagnosis in general terms; find specialist and adult congenital services; find support organisations for families.

Distinguishing features

Present at birth

Many types and severities

Often treated surgically or by catheter

Needs lifelong follow-up in many cases

What it looks like

Often invisible; may show as blue colouring, breathlessness or poor feeding in babies.

How it is recognised

Heart murmurs and abnormal scans

Newborn pulse oximetry screening

Acquired heart disease develops later in life

Related models

is a kind of - category

cardiovascular abnormality

is diagnosed by - test

echocardiography

is treated in - specialty

paediatric cardiology

is related to - complication

heart arrhythmia

In practice

Families and kinds

septal defects

valve and outflow stenoses

cyanotic defects such as tetralogy of Fallot

congenital conduction disorders

adult congenital heart disease

Standards and regulation

Newborn screening programmes

ESC and AHA adult congenital heart disease guidelines

Failure modes and hazards

Missing urgent signs in infants

Loss to follow-up in adulthood

Agents giving individual prognosis

Also called

congenital heart blockpulmonary valve stenosiscongenital aortic stenosisWatson syndromepulmonary subvalvular stenosissubpulmonary stenosissupravalvular pulmonary stenosissupravalvular aortic stenosissubvalvular aortic stenosisdiscrete subaortic stenosisfixed subaortic stenosistransposition of great vesselsCongenital cardiovascular disorder complicating pregnancy, childbirth, or the puerperiumlevo-transposition of the great arteriesdextro-transposition of the great arteriesdouble discordiacongenital pericardium anomalypulmonary atresiapulmonary atresia-intact ventricular septum syndromeatriodigital dysplasiadextro-looped transposition of the great arteries 1dextro-looped transposition of the great arteries 3congenital aortopulmonary windowconotruncal heart malformationsaortico-ventricular tunneltrilogy of FallotEisenmenger Syndromeheart septal defecthypoplastic right heart syndromecongenital aortic insufficiencyOverriding aortacyanotic heart defectscimitar syndromeacyanotic heart defectAortopulmonary septal defectcongenital stenosis of vena cavacor triatriatumCrisscross heartcardiac diverticulumcongenital anomaly of ventricular septum

+16

Where this came from

wikidata · CC0 1.0

Source repository Registry entry point

Drafted structure

Bundle to layer to finding to question, as the second pass will find it: 4 bundles · 8 layers · 8 findings · 16 questions.

Urgent Warning signs.

Safety comes first.

Baby

Infants.

Baby

Warning signs in babies.

  1. Does the baby have blue lips or skin, fast or difficult breathing, or poor feeding with sweating? boundary
  2. Should emergency services or urgent care be contacted now? action

Adult

Adults.

Adult

Warning signs in adults.

  1. Is an adult with a congenital heart condition having chest pain, fainting or new breathlessness? boundary
  2. Should they seek urgent medical help now? action
Information General facts.

Sourced information only.

Types

Defects.

Types

Defect types.

  1. What do heart charities or health services say about this defect? provenance
  2. How is it usually treated, in general terms? provenance

Personal

Prognosis questions.

Personal

Personal advice limits.

  1. Is the user asking about their own or their child prognosis or treatment? boundary
  2. How should the agent refer them to the specialist team? action
Care Services.

Specialist care matters.

Screening

Detection.

Screening

Screening.

  1. Which prenatal and newborn screening is offered here? provenance
  2. What happens after a positive screen? provenance

Transition

Adult services.

Transition

Transition to adult care.

  1. How do young people transfer to adult congenital heart services? provenance
  2. Which centres provide them? provenance
Support Families.

Families need support.

Charities

Support groups.

Charities

Support organisations.

  1. Which charities support families and adults with congenital heart disease? provenance
  2. Do they offer helplines? provenance

Pregnancy

Planning.

Pregnancy

Pregnancy planning.

  1. Should a person with congenital heart disease get specialist advice before pregnancy? action
  2. Which services provide it? provenance

What the second pass must settle

  • Should each defect be a separate entry?
  • How should specialist centres be linked?
  • How should pregnancy guidance be linked?
Draft as JSON