Registrations onto the NHR have gradually increased since it began and over 10,000 patients with SCD from 55 centres registered at the time of publication. Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 47 The functions of the NHR have expanded and include the capability to report adverse events including anonymised data for patients who have not given consent for their identifiable details to be registered. This is encouraged as a mechanism for collecting national data for shared learning from these events. This adverse event reporting should be done in addition to usual local mechanisms for reporting mortality and morbidity. A panel of three clinicians reviews clinical events and can raise concerns with the Clinical Reference Group if there are persistent events at a single centre or there are patterns of concerns nationally. The annual review has been highlighted as a fundamental component of developing specialist care for patients with SCD and all patients with SCD should have an annual review performed by their specialist centre. The NHR has developed a minimum data set for collection at annual review. Use of the NHR annual review template encourages a basic level of data collection on each patient but also allows individual centres to collect more detailed annual information if they wish. Details about the clinical information collected in the annual review are given in Chapter 17: Out-patient management and Appendix 4: Annual review pro-forma. The annual review can be printed out or transposed into a letter and given to the patient, with copies to his or her GP and any local hospital they attend as an annual summary of care. The annual review function of the NHR needs further work to become fully functional and the peer review programmes highlighted that many centres lacked resources for data input. It is envisaged that information required for the Quality Dashboard currently being developed by the Clinical Reference Group (CRG) should be collected through the NHR annual review screens, allowing centres to rapidly extricate data. The use of the NHR as a tool for annual review allows collection of up-to-date patient figures at each centre with the ability to track patient numbers over successive years. It has also allowed local or national data to be collated into an annual report (available on the website). Data presented in this report include registrations per centre, genotype, gender, age, ethnicity, adverse events and some specific treatments: transfusion, hydroxycarbamide and iron chelation. These data, plus the adverse events data are also presented at an annual conference. Additional developments include a patient card and an information service which is available via the website and allows real-time access to the clinical information. This allows filtering of information on a national, regional or trust basis and whilst data are anonymised, it can be exported locally for analysis. This facility ensures that the NHR is a useful resource for stakeholders and it has also provided anonymous information to commissioners and political ‘think tanks’. The NHR is overseen by a steering group of stakeholders from the third sector and community organisations, clinical services and NHS England. The NHR is a continually evolving resource. It has great potential. Future developments include its use for quality assurance and for epidemiological studies. This is especially valuable given the lack of evidence for the provision of some aspects of clinical care in SCD. The NHR steering Chapter 2: Organisation of care Standards for Clinical Care of Adults with Sickle Cell Disease in the UK, 2nd Edition 48 board is also keen to promote greater user interaction, for example, by including patient surveys or by linking to patient information and education websites. Clinical audit Background evidence Clinical audit is a quality improvement activity that seeks to improve patient care and outcomes through the systematic review of care against explicit criteria, and the implementation of change according to available evidence. Defining expected standards of care, which can be used to judge service quality, is fundamental to the process of audit. The editorial board has attempted to ensure that the standards within this document are auditable and can be used as a framework for the development of audit standards. In addition, there are other areas of care for which audit standards already exist. There are six quality statements in the NICE Quality standard [QS58], ‘Sickle cell disease’ (National Institute for Health and Care Excellence, 2014b). These were based on the NICE clinical guideline, ‘Sickle cell disease: managing acute painful episodes in hospital’ (National Institute for Health and Care Excellence, 2012b). We highlight the first four of the quality statements: · People who present at hospital with an acute painful sickle cell episode should have a pain assessment, a clinical assessment and appropriate analgesia within 30 minutes of presentation · People with an acute painful sickle cell episode should have an assessment of pain relief every 30 minutes until satisfactory pain relief has been achieved and then at least every 4 hours · People with an acute painful sickle cell episode who are taking strong opioids should be monitored for adverse events every hour for the first 6 hours after first administration or step up of pain relief and then