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Registering and Following up on Patients Who Have Received a Transplant
The Haematopoietic Stem-Cell Transplant Registry
Objective and general characteristics
The aim of the haematopoietic stem-cell transplant registry is to meet the requirements regarding healthcare planning and services procurement of CatSalut and the Catalan Ministry of Health and Social Security.
It is also designed to provide information to the Haematopoietic Stem Cell Transplant Advisory Committee and all the professionals involved in this kind of transplant.
These objectives are achieved by carrying out the following tasks:
· Determining the epidemiological characteristics of patients receiving this kind of transplant.
· Calculating the number of haematopoietic stem-cell 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 haematopoietic stem-cell transplantation are complied with.
· Serving as a basis for clinical and epidemiological studies on haematopoietic stem-cell transplantation.
Because the haematopoietic stem-cell transplant registry is an obligatory, population-based registry, centres authorised to carry out haematopoietic stem-cell transplants must provide the registry with all the information necessary for operation and updating data.
Organisation and operation
The haematopoietic stem-cell transplant registry began operating in 1988.
The registry is managed by OCATT. However, the Haematopoietic Stem-Cell Transplant Advisory Committee, which is made up of experts in the field and representatives of the public health service, supervises maintenance and monitoring of the registry and provides assessment on data processing.
The registry contains patient details and data on transplantation, such as the type of transplant carried out, histocompatibility, the source of stem cells, variables associated with the therapeutic indication, variables associated with the technique, evolution of the transplant and mortality variables.
Data on all haematopoietic stem-cell transplants carried out during the year are collected on a monthly basis by means of individual notification forms filled out by each centre and sent to the registry. Follow-up information on patients who received a transplant in previous years is collected in January and February each year.
Quality control
Once the data from all the centres have been collected, different internal quality-assurance validation mechanisms are implemented: the thoroughness and consistency of the data is first checked manually, and then computer validation is carried out, consisting of applying a set of criteria established for each variable.
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
Haemopoiesis stem-cell transplant registry
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