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Updated Privacy Notice

Important updates made to the NCMD Privacy Notice

We’ve just made some updates to the NCMD Privacy Notice, which includes better explanation about how and what data is collected by the National Child Mortality Database (NCMD), what it does with the data, how long data is kept for and how personal information is protected.

Read in full: Privacy Notice

NCMD publishes first annual report

NCMD publishes first annual report

NCMD publishes first annual report

The National Child Mortality Database (NCMD) Programme has today published its first annual report.

The NCMD programme collates and analyses information collected from Child Death Overview Panel (CDOP) reviews of all live-born children in England, who die before their 18th birthday.

The purpose of collecting and analysing this information nationally is to ensure that deaths are learned from, that learning is widely shared and that actions are taken, locally and nationally, to reduce the number of children who die.

The NCMD first annual report describes the background for the development of the national data collection system and the progress made in the first year of the programme. It is intended to be of general interest to professionals, bereaved parents and the public.

Key Achievements

The report sets out the key achievements during the first year of the NCMD programme. These include:

  • Governance and operational structures were developed ensuring bereaved families and professionals who care for children are fully represented at the very core of this programme.
  • A communications plan was developed, which focused on effective engagement through the NCMD website, social media and presentations at national events, such as, NHS England implementation events and webinars, the National Network of Child Death Overview Panels (NNCDOP) Annual Conference and the Annual Conference of the Royal College of Paediatrics and Child Health. This has involved raising awareness about NCMD to CDR partners and specialist professional organisations.
  • A legal basis for collecting and holding data in NCMD was established.
  • A set of supplementary reporting form questions was updated and expanded to collect information from those people who provided services to the child and their family during life and after death.
  • The NCMD web-based platform was designed and built. A pilot was carried out to test the system, which resulted in the provision of valuable feedback from CDOPs that enabled appropriate adjustments to be made before going live. The team worked with members of the NCMD Steering Group, Parent, Patient and Public Involvement Group, Professional Advisory Group and CDOPs to ensure that when the system was launched it met the needs of all stakeholders.
  • Data linkage collaboration was set up with the Perinatal Mortality Review Tool (PMRT), with the aim to support professionals by reducing the number of forms they need to complete to provide information for both data collection systems. Progress was made in mapping both national data sets and setting up the principles and plans for the technical work required.
  • An NCMD pilot phase was completed where CDOPs tested NCMD by entering information into the system and providing feedback on what works and what needed changing.
    After the successful completion of the pilot, the NCMD system started data collection on 1st April 2019, as planned.

NCMD focus since the start of the national data collection on 1 April 2019

A set of milestones, which focus on driving improvements in the collection, completeness and quality of the information feeding into NCMD were achieved during the first 6-months since the national data collection began. These include:

  • A Quality Improvement plan was developed with a focus, in the first year of data collection, to drive improvements in data completeness and quality along with initiatives to support CDOP offices in collecting the information and recording it correctly on the online systems.
  • Quality Improvement webinars are being organised, open to all CDOPs, as a mechanisms for direct support from the NCMD team and to receive feedback from CDOPs on their experiences using the database and the new data collection fields.
  • Regular bulletins and newsletters are published on the NCMD website detailing programme progress and providing guidance to CDR professionals on database development, updated data fields and quality improvement requirements and recommendations.
  • Individual regular updates on data quality indicators will also be sent to CDOPs via secure email.

Dr Karen Luyt, the NCMD Programme Lead, said:

“This is our first NCMD annual report, which covers the first year of programme work, which involved establishing the governance structures of the programme as well as the technical development of the data collection and analysis system itself.

We began establishing our network of collaborators and partners, which is continuously growing.

We are privileged to be part of a community of professionals, bereaved families and members of the public who with their expertise, knowledge and passion are central in driving this work forward so it can achieve its main aim to improve young lives.”

Sylvia Stoianova, NCMD Manager, added:

“We are very pleased with the volume of information we’ve received to date, which is allowing us to assess the data in view of how useful it can be for providing us with the knowledge of why children die and how child deaths are reduced in future.

We are also very grateful for the commitment of everyone involved in the process. There has been a significant uptake in data submission by the CDOP offices across England. Without the data collated during the CDR and CDOP processes feeding into the national system, there will not be national analysis of information and our knowledge, understanding and learning to improve young lives will remain limited.”

BMJ article: Assessment of investigations into SUDIC post-CDR

BMJ article: Assessment of investigations into SUDIC post-CDR

Quality of investigations into unexpected deaths of infants and young children in England after implementation of national child death review procedures in 2008: a retrospective assessment

Members of the NCMD Steering Group, Peter Fleming and Peter Blair, co-authored this study published on 27 September 2019 in the BMJ Journal ‘Archives of Disease in Childhood.’

The retrospective assessment looks at the quality of investigations into unexpected deaths of infants and young children in England after implementation of national child death review procedures in 2008.

Read the abstract details below and click the links for full information.

Year of sudden unexpected death (91 deaths). SIDS, sudden Infant death syndrome; SUDC, sudden unexplained death in childhood.



In 2008, new statutory national procedures for responding to unexpected child deaths were introduced throughout England. There has, to date, been no national audit of these procedures.

Study design

Families bereaved by the unexpected death of a child under 4 years of age since 2008 were invited to participate. Factors contributing to the death and investigations after the death were explored. Telephone interviews were conducted, and coroners’ documents were obtained. The nature and quality of investigations was compared with the required procedures; information on each case was reviewed by a multiagency panel; and the death was categorised using the Avon clinicopathological classification.


Data were obtained from 91 bereaved families (64 infant deaths and 27 children aged 1–3 years); 85 remained unexplained after postmortem examination. Documentation of multiagency assessments was poorly recorded. Most (88%) families received a home visit from the police, but few (37%) received joint visits by police and healthcare professionals. Postmortem examinations closely followed national guidance; 94% involved paediatric pathologists; 61% of families had a final meeting with a paediatrician to explain the investigation outcome. There was no improvement in frequency of home visits by health professionals or final meetings with paediatricians between 2008–2013 and 2014–2017 and no improvement in parental satisfaction with the process.


Statutory procedures need to be followed more closely. The implementation of a national child mortality database from 2019 will allow continuing audit of the quality of investigations after unexpected child deaths. An important area amenable to improvement is increased involvement by paediatricians.

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