Clinical Registry Services for Cystic Fibrosis

Description

To provide to Authority annual year of care banding information derived from the Registry, which will include a breakdown by Authority Specialised Commissioning Hub. To provide at the request of Authority on an ad hoc basis such aggregated data as is available in the Registry for the purposes of audit and service evaluation, subject to the following: • Compliance with Research Ethics approvals, the Data Protection Legislation and the terms of any patient consent relied on. • That Authority will make every effort to provide the maximum possible notice of such requests. • That, on receipt of an ad hoc request, the Supplier will provide an estimated delivery date. The Supplier will aim to complete requests within 10 working days. This period may have to be extended subject to the complexity of the request, and concomitant work streams. • That the Supplier will make all reasonable efforts to comply with specific deadlines set by Authority • Any data requests for Research purposes are subject to approval by the Registry Research Committee (a sub-group of the Registry Steering Committee).