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Registering and Following up on Patients Who Have Received a Transplant
The Heart Transplant Registry
Objective and general characteristics
The basic aim of the heart transplant registry is to provide a thorough and valid database to supply information to professionals working in the fields of healthcare, planning, resource management and services procurement.
This objective is achieved by carrying out the following tasks:
· Determining the epidemiological characteristics of the population.
· Calculating the number of heart transplants in Catalonia and studying the evolution of these transplants.
· Providing information for the evaluation of the results obtained and resources used and to ensure the criteria governing heart transplantation are complied with.
· Serving as a basis for clinical and epidemiological studies on heart transplantation.
Because the heart transplant registry is an obligatory, population-based registry, centres authorised to carry out heart transplants must provide the registry with all the information necessary for operation and updating data.
Organisation and operation
The heart transplant registry began operating in 1993 and contains data collected regularly and systematically on all transplants carried out in Catalonia since 1994. Data on transplants carried out from 1984 to 1993 were collected subsequently and added to the registry.
Hospitals notify the registry about the transplants they carry out and once a year provide information on patient follow-up.
The registry contains patient details and data on the receiver, transplantation and donor, as well as variables associated with therapeutic indications, transplant evolution and mortality.
Quality control
The data submitted to the heart transplant registry are checked for quality assurance in terms of validity and thoroughness. They are also processed by computer to verify the coherence between variables and the ranges of possible values.
The data are subsequently processed and specific reports are drawn up. These reports are then sent to the centres and have been shown to contribute greatly to maintaining data quality.
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
Heart transplant registry
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