Registration of congenital abnormalities and rare diseases is now taking place across the whole of England for the first time. The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) was launched by Public Health England (PHE) on the 1st April 2015 and PHE has committed to the expansion of congenital anomaly and rare disease registration in England from the current 49% of births to cover the whole population of England. For the East of England this will mean the collection of information on all suspected and confirmed congenital anomalies with expansion to other rare diseases shortly after.
All data will be collected onto a single national secure data management system. This will act as a much-needed resource to support individual patients, their families, clinicians, researchers, commissioners and public health professionals and should improve monitoring of the frequency, nature, cause and outcomes of congenital anomalies and rare diseases.
The new register is central to the UK Rare Disease Strategy and the Department of Health 2020 Vision on Rare Diseases and supports requests from patients, identified through public consultation, for congenital anomaly and rare disease registration. The new service is integral to the commitments set out in the 2011 Chief Medical Officers Report and the UK Rare Disease Strategy.
The aim is to provide a comprehensive national registration service for all congenital anomalies and rare diseases diagnosed and treated in England in order to:
• provide a resource for clinicians to support high quality clinical practice.
• support and empower patients and their carers, through the provision of information relevant to their disease or disorder.
• provide epidemiology and monitoring of the frequency, nature, cause and outcomes of these disorders.
• support all research into congenital anomalies, rare diseases and precision medicine including basic science, cause, prevention, diagnostics, treatment and management.
• 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.
Much of the thinking for the design of the NCARDRS is based on the experience of creating and managing the National Cancer Registration Service (NCRS), at PHE, and the expertise 0f the British Isles Network of Congenital Anomaly Registers (BINOCAR). The new NCRS in the UK is now one of the largest, most timely and comprehensive cancer registration services anywhere in the world.
Data is collected under legal permissions granted under Section 251 of the NHS Act 2006. Renewal of this approval must be sought annually from the Confidentiality Advisory Group of Health Research Authority. Details of our current approval can be found on the HRA website. CAG reference CAG 10-02(d)/2015.
Recognising the extraordinary privilege of Section 251, NCARDRS has very strict policies approved by PHE and HRA that cover data collection, storage and release. Patients have an absolute right of opt-out from the register.
For information contact: Sarah Stevens Public Health Consultant: firstname.lastname@example.org
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