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National Disease Registration Service: NCARDRS National Disease Registration Webinar December 2020
National Disease Registration Service:
NCARDRS
National Disease Registration Webinar December 2020
Presenters
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Jenny Broughan
Principal Analyst, NCARDRS.
National Disease Registration
Professor Judith Rankin
Prof of Maternal and Child
Health
Newcastle [email protected]
Objectives of this webinar
• An introduction to NDRS’s work on congenital anomaly
registration and reporting and our path to national
coverage
• Putting registration data in the context of research, and
of what we can show with the data
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Congenital anomaly registration introduction
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Public Health England
Health Improvement Directorate
National Disease Registration Service (NDRS)
National Congenital Anomaly
and Rare Disease Registration
Service (NCARDRS)
National Cancer Registration &
Analysis Service (NCRAS)
Rare disease
team
Congenital
anomaly team
NCARDRS – key deliverables
•support and empower patients and their carers, by providing a national
register of their disease or disorder.
•provide a resource for clinicians to support high quality clinical practice.
•provide epidemiology and monitoring of the frequency, nature, cause and
outcomes of these disorders.
•support research into congenital anomalies and rare diseases.
•inform the planning and commissioning of public health and health and
social-care provision.
•Provide a resource to monitor, evaluate and audit health and social-care
services, including the efficacy and outcomes of screening programmes.
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Congenital anomaly registration prior to
2015
7 regional registers in England
49% of births in England
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NCARDRS
• Established in April 2015
• 3 new regions (North West, East of England, London & South
East)
• Standardised
➢ Data entry & processing
➢ ICD-10/Orphanet disease coding,
➢ IG protocols
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What data do we collect?
Case definition
Suspected and confirmed significant structural
anomalies, chromosomal anomalies and genetic
syndromes present at birth
Section 251 of the NHS Act (2006)• NCARDRS has legal permission under Section 251 of
the NHS Act 2006 (Control of Patient Information) to
collect non-consented patient identifiable data
• Activity must be in the public interest or in the interests of
improving patient care
• Must be compliant with DPA/GDPR
• Undergo yearly review with Confidentiality Advisory
Group (CAG) of the Health Research Authority (HRA)
• Patient can opt out at any time
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The data we collect
Mother Pregnancy Baby
Test/screening
Name
Address
Ethnicity
Date of birth
NHS number
EDD
No of foetuses
Delivery date
Method of delivery
Name
Gender
Outcome
Anomaly
BMI
Smoking status
Drug and alcohol use
Illness
When
Type of test
Test results
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Path to national coverage
In 2018, NCARDRS achieved its goal of national data collection and for the first
time, reporting is based on national data coverage for all 10 regions, covering
the whole of England.
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Routine data submissions & reporting
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Fetal Anomaly Screening Programme
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•Screening for 11 structural conditions and Downs
syndrome (T21)
•Test and screening information recorded for these
anomalies
•Evaluating detection rates requires data on false
negatives
•National approach required
•NCARDRS provides each maternity trust in
England with detection rates for each of these
conditions, benchmarked against regional and
national detection rates
Congenital Anomaly Statistics 2018
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Total birth prevalence of 213.3 per 10,000 total births or 1 in 47.
A total of 73.4% of babies diagnosed with a congenital anomaly resulted in a
live birth or 1 in every 64 live births.
(EUROCAT) Regional prevalence : All
anomalies 2018
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Existing regions have higher prevalence
NEW
NEW
NEW
Regional prevalence : FASP conditions 2018
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Anencephaly
Spina bifida
Cleft lip
Diaphragmatic hernia
Gastroschisis
Exomphalos
Serious cardiac
Bilateral renal agenesis
Lethal skeletal
dysplasia
Edwards’ syndrome
(Trisomy 13)
Patau’s syndrome
(Trisomy 18)
Down’s syndrome
(Trisomy 21)
The prevalence of FASP conditions is consistent across regions
Birth prevalence 2018
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The number of babies diagnosed with each congenital anomaly per 10,000 total
births by congenital anomaly subgroup in England, 2018
Total birth prevalence Live birth prevalence
International comparison
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*not including NCARDRS data
Access to NCARDRS data
Routine submissions & reporting
Data requestsFormal requests to the Office for Data Release
Contact: [email protected]
Partnership working
• Fund PHE staff
• Sponsored external staff with PHE honorary contracts
✓ Must align with NCARDRS & PHE’s objectives to improve the
nation’s health
✓ Expect to deliver synergistic benefits
✓ Contact [email protected] to discuss informally
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What data is available?
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2019
available
early 2021
Acknowledgements
Registration teams across NCARDRS,
Danielle Martin
Nick Aldridge
All the notifiers who have submitted data to us
This work uses data that has been provided by patients, the NHS and other
health care organisations as part of patient care and support. The data is
collated, maintained and quality assured by the National Congenital Anomaly
and Rare Disease Registration Service, which is part of Public Health England
(PHE).”
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Partnership / Project-based working
• The impact of COVID 19
• Mortality trends
• Congenital anomaly prevalence.
• Student projects investigating:
• NCARDRS data quality
• Descriptive epidemiology & risk factors
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• Linkage with prescription data
• Neural tube anomalies
• Cardiac anomalies
