The Renal Registry is non profit making and as part of the Renal Association is registered as a charitable activity by the Charity Commission.
The UK Renal Registry was established by the Renal Association with support from the Department of Health, the British Association of Paediatric Nephrologists, and the British Transplant Society as a resource for the development of patient care in renal disease.
The Registry provides a focus for the collection and analysis of standardised data relating to the incidence, clinical management and outcome of renal disease. It thus acts as a source of comparative data, for audit/benchmarking, planning, clinical governance and research. The UK Renal Registry monitors indicators of the quality as well as quantity of care, with the aim of improving the standard of care. There is currently a concentration on data concerning renal replacement therapy, including transplantation. At a later date there will be an extension to other forms of treatment of renal disease.
There are many renal registries in other countries which provide data on the acceptance rate of patients for renal replacement therapy, the total number of patients being treated, treatment modalities and survival. The regular collection and analysis of biochemical and haematological information is a unique feature of the UK Registry.
Data is collected quarterly by automatic downloading from renal unit databases. Reports are published annually to allow comparative audit of facilities, patient demographics, quality of care and outcome measures.
The Registry provides data for participating renal units, NHS Trusts, commissioning authorities and regional offices. The development of the Registry is open to influence by all interested parties including clinicians, trusts, commissioning authorities, and patients organisations.
A more detailed explanation of the Registry's activity is contained in the document 'The Registry Rationale' in the Report Appendix .
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Functions of the UK Renal Registry |
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· To collect demographic and descriptive data for comparison and planning |
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· To facilitate comparative audit by means of a carefully defined data set. |
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· To collect data on indicators of quality of care to facilitate:
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· To produce national and local outcome data. |
The initiation of the Registry was financed by grants from the Department of Health and from industry. However its continuing activity is self-funded by a charge to participating renal units of an annual fee per patient registered. In this way the Registry is able to remain an independent source of data and analysis on national activity in renal disease.
The Registry remains a restricted fund within the Renal Association registered charity. Any money received by the Registry from commercial sources has therefore only been accepted on the basis of a charitable donation with no benefit derived by these companies.
In addition to any confidentially issues, if the Registry were to offer services to commercial companies, it would be classed as 'trading' by Customs and Excise and would be liable to charge an additional 17.5%VAT on the renal unit capitation fee. The current annual charge is £15 per patient registered, which is less than 0.05% of the annual patient treatment cost.
The detailed accounts of the Registry are provide to the Trustees and a financial report is given at the annual general meeting of the Renal Association.