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Rare Diseases

Question for Department of Health

UIN 8619, tabled on 5 September 2017

To ask the Secretary of State for Health, what criteria NHS England's Rare Disease Advisory Group uses to determine the appropriateness of clinical evidence for rare disease treatments considered through the prioritisation process for specialised services.

Answered on

13 September 2017

The role of the Rare Diseases Advisory Group (RDAG) is to make recommendations to the Clinical Priorities Advisory Group on which highly specialised services or technologies should be prioritised for investment; this includes services or technologies already commissioned and services and technologies that have not previously been commissioned.

The terms of reference for RDAG set out that the committee, in undertaking its functions:

- formulates its advice by calling on sources of sound evidence from outside the National Health Service, such as professional bodies, and recommends the commissioning of external assessment as necessary;

- improves the effectiveness and transparency of its recommendations, by ensuring input from a wide range of clinical, commissioning and finance experts, as well as patients/carers and lay members; and by using a consistent decision-making process to develop recommendations;

- streamlines the decision-making process by combining different sources of advice and by reducing the number of endorsement tiers required before the final decision; and

- undertakes economic evaluation of proposals for services for rare diseases as necessary.

Answered by

Department of Health and Social Care