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Independent Advisory Panel on Data Release (IAPDR)

On 1 October 2021, as part of the government’s strategy to transform the public health system in England, responsibility for the management of the National Disease Registration Service (NDRS) transferred from Public Health England (PHE) to NHS Digital.

NDRS collects, collates data on patients with cancer, congenital anomalies and rare diseases and is made up of two disease registers, these are unchanged by the transfer of NDRS to NHS Digital.  NDRS remains a vital resource that helps researchers, healthcare professionals and policy makers and many others make decisions about NHS services and the treatments people receive.  Learn more about the NDRS

Changes to data access arrangements – the role of the Independent Advisory Panel on Data Release (IAPDR)

As a result of the transfer, NHS Digital became the data controller for the NDRS data; this brought with it a change to the way in which access to the data could be requested.  NDRS and NHS Digital colleagues are working hard to ensure that the transition of services is as smooth as possible for NDRS’ customers and its staff.  To support the transition, the Independent Advisory Panel on Data Release (IAPDR) was repurposed, from its previous role, to assist NHS Digital with a smooth transition to the new arrangements for data access.

Documents for the previous role and the work of the IAPDR are available

Further information

internal NDRS data release key actions taken

As identified in the IAPDR minutes, panel members have provided advice, steer and challenge to support the establishment of NDRS data requests within NHS Digital.

Last edited: 19 February 2024 11:11 am