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Registering and Following up on Patients Who Have Received a Transplant
The Catalan Renal Patient Registry
Objective and general characteristics
The Catalan renal patient registry (RMRC) aims to provide information to all professionals involved in planning, treating and evaluating the care given to patients in Catalonia with end-stage renal disease.
This objective is achieved by carrying out the following tasks:
· Determining the epidemiological characteristics of the people on the registry and evaluating the incidence and prevalence of renal disease and renal replacement therapy in Catalonia, as well as the relevant morbidity and mortality rates.
· Detecting possible risk factors related to the etiology and evolution of end-stage renal disease, based on the analysis of the epidemiological data collected.
· Evaluating the healthcare resources used and results obtained in the treatment of patients with end-stage renal disease.
· Promoting multicentre clinical and epidemiological studies that help verify the possible risk factors detected.
The RMRC is an obligatory, population-based registry, i.e. it is a source of information on all patients receiving renal replacement therapy (dialysis or transplant) in Catalonia. All public and officially approved centres must provide the registry with information on the patients they treat.
The registry began operating in 1984 and has recorded all the new cases of patients receiving renal replacement therapy. In 1986, patients who had started treatment before 1984 were added to the registry.
Organisation and operation
In 1987, the structure of the care network for renal disease was organised on three levels:
· Nephrology services are responsible for prevention, diagnosis and determining the most suitable renal replacement therapy for each patient.
· These nephrology care units provide basic renal care.
· Dialysis centres provide renal replacement therapy in the form of dialysis.
There are eight renal transplantation units, two of which are paediatric centres.
The Registry Committee is the professional body responsible for the registry, and is made up of the public administration employees who work on the registry, a doctor from each nephrology service providing patient information and a representative of the Renal Transplantation Advisory Committee. The Registry Committee’s responsibilities are as follows:
· To ensure the regulations established for the use of registry data are complied with, particularly those relating to confidentiality.
· To study and propose any changes in design and how information is collected, etc. to ensure the registry is as useful and flexible as possible.
· To issue regular reports on the situation of end-stage renal disease patients in Catalonia.
· To study and approve, as applicable, any requests to use registry information.
The RMRC is a centralised registry that is supplied with data through:
· A continuous notification circuit that provides the information generated by the centres regarding new cases, changes in treatment, deaths and discharges. These data are submitted to the registry on a notification form.
· A batch notification circuit that updates patient information on 31 December each year. This circuit also makes it possible to collect other data for specific studies. Once a year, the Catalan Histocompatibility Laboratory sends immunological data on donors and receivers so that donors' characteristics can be compiled on the registry of donors and patients waiting for transplants, which is also managed by OCATT.
The RMRC submits data to the European Dialysis and Transplant Association (EDTA) and transplantation data to the Collaborative Transplant Study (CTS).
The registry includes patient details, socio-demographic and clinical data, as well as data on treatments (dialysis and transplantation), donors, histocompatibility and mortality.
Quality control
The data submitted to the RMRC go through various levels of quality control: the thoroughness and consistency of the data is first checked manually, and the coherence between variables, the ranges of values and the logic of sequence time frames are validated by computer.
The feedback given to the healthcare centres and regions contributes a great deal to guarantee the quality of the registry.
External validation carried out in 1988 showed that the information being provided on the variables was very thorough and that concordance was excellent, which demonstrated the validity of the data used to perform clinical and epidemiological studies.
The registry is also an accessible source of information that meets the needs of external users in other fields of activity. In all cases, information processing and access are subject to the personal-data-protection regulations currently in force.
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Catalan renal patient registry
Haemopoiesis stem-cell transplant registry
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