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Research draft

congenital disorder

vr.tr.congenital-disorder · XCT.STA

Let an agent explain congenital conditions in general terms and point to screening, specialist care and family support, without diagnosis and with respectful, non-stigmatising language.

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 explain congenital conditions in general terms and point to screening, specialist care and family support, without diagnosis and with respectful, non-stigmatising language.

A condition present at birth, whether structural, functional, genetic or caused by prenatal factors, such as congenital heart defects, neural tube defects and chromosomal conditions; some are detected by prenatal or newborn screening.

What it is for: A health topic relevant to screening, care and support.

It can be explain congenital conditions in general terms; find screening information; find specialist care and family support; use respectful language.

Distinguishing features

Present from birth

Very diverse

Some detected by screening

Often lifelong support needs

What it looks like

Varies widely; some conditions are visible and many are not.

How it is recognised

Present at birth

Structural, functional or genetic

Acquired conditions develop later

Related models

is a kind of - category

disease and health condition

is detected by - screening

prenatal and newborn screening

is treated by - care

paediatric specialists

is related to - framework

disability

In practice

Families and kinds

congenital heart defects

neural tube defects

chromosomal conditions

congenital metabolic disorders

congenital infections

Standards and regulation

National screening programmes

Rare disease policies

Disability rights law

Failure modes and hazards

Agents diagnosing conditions

Stigmatising language

Blaming parents

Also called

choristiaCongenital leukemiaDrachtman Weinblatt Sitarz syndrometracheobronchomegalyBreastfeeding and HIVethmocephalyvertical transmission of chikungunya viruscongenital amegakaryocytic thrombocytopeniacapillary malformationinfectious embryofetopathystenosis of pulmonary arteryLeydig cell hypoplasiacongenital intrinsic factor deficiencycongenital pulmonary artery stenosishypogonadotropic hypogonadism 23 with or without anosmiahereditary motor and sensory neuropathypyelectasisuterine duplication anomaliesdisorder of sex development of gynecological interestcongenital cataracts, facial dysmorphism, and neuropathyHereditary motor and sensory neuropathy with proximal dominancenon-progressive congenital ataxiaabnormality of organs and soft tissues of pelvis complicating pregnancy, childbirth, or the puerperiumHIV and pregnancycongenital myopathymalformationvascular malformationVaterproliferationsupernumerary body partcongenital transmissionurethral strictureIntrauterine epidermal necrosisfetal alcohol spectrum disordersNeurocristopathyperinatal diseaseRenal dysplasiacongenital abnormalityabdominal wall defectSchindler disease

+93

Where this came from

wikidata · CC0 1.0

Drafted structure

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

Care Clinical care.

Clinicians diagnose.

Urgent

Unwell baby.

Urgent

Urgent concerns.

  1. Is a baby showing urgent signs such as breathing difficulty or blue colour? boundary
  2. Which emergency number should be called? action

Diagnosis

No self-diagnosis.

Diagnosis

Diagnosis limit.

  1. Is the user asking the agent to diagnose a condition? boundary
  2. How should they be referred to a paediatric specialist? action
Screening Prenatal and newborn.

Screening varies.

Prenatal

Pregnancy screening.

Prenatal

Prenatal screening.

  1. What prenatal screening is offered, according to health services? provenance
  2. Who can explain results and options? provenance

Newborn

Newborn checks.

Newborn

Newborn screening.

  1. Which conditions do newborn checks cover here? provenance
  2. How are parents informed? provenance
Support Families.

Families need support.

Organisations

Charities.

Organisations

Support organisations.

  1. Which organisations support families affected by this condition? provenance
  2. How can they be contacted? action

Rights

Education and benefits.

Rights

Rights and support.

  1. Which educational and financial support is available? provenance
  2. How can it be accessed? action
Language Respect.

Language matters.

Respect

Non-stigmatising.

Respect

Respectful language.

  1. Does the language avoid stigma and outdated terms? boundary
  2. Is it person-first or as the community prefers? provenance

Causes

Evidence.

Causes

Causes.

  1. What does evidence say about causes, without blaming parents? provenance
  2. Which sources explain it? provenance

What the second pass must settle

  • Should condition groups be separate entries?
  • How should screening be localised?
  • How should alias lists be curated?