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skip to main content gov.uk uses cookies to make the site simpler. find out more about cookies gov.uk search search menu departments worldwide how government works get involved policies publications consultations statistics announcements home guidance national congenital anomaly and rare disease registration service (ncardrs) a service to support clinicians and patients, service delivery, commissioning and public health. published 27 march 2015 last updated 25 may 2018 — see all updates from: public health england contents congenital anomalies rare diseases ncardrs regional teams information governance and data protection data sharing eurocat orphanet data confidentiality and security patient access to their own data opt out engaging patients, charities and public the national congenital anomaly and rare disease registration service ( ncardrs ) records those people with congenital abnormalities and rare diseases across the whole of england. this registration service: provides a resource for clinicians to support high quality clinical practice supports and empowers patients and their carers, by providing information relevant to their disease or disorder provides epidemiology and monitoring of the frequency, nature, cause and outcomes of these disorders supports all research into congenital anomalies, rare diseases and precision medicine including basic science, cause, prevention, diagnostics, treatment and management informs the planning and commissioning of public health and health and social care provision provides a resource to monitor, evaluate and audit health and social care services, including the efficacy and outcomes of screening programmes public health england ( phe ) has expanded congenital anomaly and rare disease registration to cover the whole population of england, to meet national requirements for high quality public health disease surveillance identified by the chief medical officer. the creation of the ncardrs is part of the uk rare disease strategy and the department of health 2020 vision on rare diseases. congenital anomalies up to 1 in 20 babies are born with problems such as cleft palate, spina bifida or down’s syndrome. these are sometimes called congenital malformations or congenital anomalies. screening during pregnancy can detect some congenital anomalies, while some are found at birth. others become obvious only as a baby grows older. ncardrs publishes annual statistics on congenital anomalies . rare diseases rare diseases affect a small number of people compared to the general population and, because they are rare, can be difficult to diagnose, treat or prevent. a disease is considered to be rare when it affects 1 person in 2,000 or fewer. collectively rare diseases are not rare. 1 in 17 people will be affected by a rare disease at some point in their life. this is about 3.5 million people in the uk. for further information on the progress of registering rare diseases in the uk, contact the specialist rare disease team on phe [email protected] . ncardrs regional teams the national service incorporates 7 historical regional congenital anomaly registers, the national down syndrome cytogenetic register ( ndscr ) and the british isles network of congenital anomaly registers ( binocar ) hub. new regional teams have been established in parts of the country where there had previously been no data collection. the national service collects data onto a single secure data management system for england. the service has 9 regional offices. you can use the ncardrs map tool to find out which office you should contact. if you know which region you need the contact details for the offices are: london and south east ncardrs london and south east office email phe [email protected] telephone 020 765 48070 this office is based in london midlands and east ncardrs east midlands and south yorkshire office email phe [email protected] telephone 0114 201 3060 this office is based in sheffield ncardrs east of england office email phe [email protected] telephone 01223 724 430 this office is based in cambridge ncardrs west midlands office email phe [email protected] telephone 0121 232 9230 this office is based in birmingham north ncardrs north west office email phe [email protected] telephone 0161 234 9471 this office is based in manchester ncardrs northern office email phe [email protected] telephone 0191 2426001 this office is based in newcastle-upon-tyne south west ncardrs south west office email phe [email protected] telephone 0117 968 9236 this office is based in bristol ncardrs thames valley office email phe [email protected] telephone 0117 968 9189 this office is based in bristol ncardrs wessex office email phe [email protected] telephone 0117 968 9238 this office is based in bristol electronic notification forms are available for: collecting antenatal data collecting delivery data collecting postnatal data information governance and data protection patient data is collected under legal permissions granted to phe under section 251 of the nhs act 2006. phe has permission from parliament to collect this data without the need to seek consent from individual patients. phe must seek renewal of this approval annually from the secretary of state via the confidentiality advisory group of health research authority ( hra ) . details of our current approval are available on the hra website . to manage this data ncardrs has strict policies approved by phe and hra that cover data collection, storage and release. these policies define: how data is collected the requirements for the storage environment the contractual arrangements for employing staff the approvals required for any release the service also conforms to the requirements of the data protection act (1998). for any queries or further information about information governance and data protection please email [email protected] . national congenital anomaly and rare disease registration service ( ncardrs ) privacy notice ( pdf , 122kb , 7 pages ) data sharing the service does not share patient-identifiable information unless: the patient has given consent to this sharing there are specific permissions given from a valid research ethics committee there is legislation in place for the recipient to receive the data identifiable data is only released if all these conditions are met, and the data recipient must have appropriate methods for data storage and only hold the data for the period of their study. the use of congenital anomaly and rare disease data is encouraged for research, audit and information. potential researchers must contact ncardrs early on in a project to: make sure the data is able to answer your question make sure the research project is novel and nobody else has recently or is currently carrying out the same work make sure the data requested is not already publicly available for national data requests please email [email protected] . researchers can only use information that might identify you if they have your consent or legal and ethical permission to do so. part of this research may involve sending identifiable information to nhs digital and the office for national statistics ( ons ). researchers can request data linked to your identifiable information held by the nhs digital and ons , such as hospital admissions and civil death registrations. for regional data requests please contact your regional office. eurocat eurocat (european surveillance of congenital anomalies) is a european network of population-based registries for the epidemiologic surveillance of congenital anomalies. see the eurocat website. ncardrs shares data with eurocat in order to pool data across a wider geographical area, make comparisons across europe and share expertise. eurocat meet the strict information governance standards for data processing. data from ncardrs are available, together with data from all other eurocat registries, on the eurocat website. see: prevalence rates for just

URL analysis for swcar.org.uk

https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/browse/justice
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/browse/tax
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/#engaging-patients-charities-and-public
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/government/organisations/public-health-england
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/contact
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/contact/govuk
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/government/organisations
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/government/get-involved
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/browse/education
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/#congenital-anomalies
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/browse/visas-immigration
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/browse/driving
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/#rare-diseases
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/#opt-out
https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/help
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  ARGS swcar.org.uk

  PORT 43

  TYPE domain

DISCLAIMER
This WHOIS information is provided for free by Nominet UK the central registry
for .uk domain names. This information and the .uk WHOIS are:
Copyright Nominet UK 1996 - 2017.
You may not access the .uk WHOIS or use any data from it except as permitted
by the terms of use available in full at http://www.nominet.uk/whoisterms,
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  NS45.1AND1.CO.UK 217.160.80.156

  NS46.1AND1.CO.UK 217.160.81.156

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