The medical registry


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by pro.dr. Ahmed Hassouna
at eldemerdash hospital, cardiology department
Ainshams university
15-1-2011 1st bimonthly meeting of YIF

Published in: Health & Medicine
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The medical registry

  1. 1. The Medical Registry<br />Ahmed Hassouna, MD. <br />Diploma of Medical Statistics & Clinical Trials, Paris 6 University.<br />
  2. 2. The medical registry is a database of clearly defined set of health and demographic data of identifiable persons that are collected mainly to serve a specific public health purpose. <br /><br />
  3. 3. A- Implementation plan<br />Development of a timeline, actual and expected registry size in the next (n) years. <br />Plan necessary hardware and software, training of personnel and development of a quality control system.<br />Test our plan through a pilot phase with sufficient cases and time to detect problems in all the phases of the registry.<br /><br />
  4. 4. B- Adequate documentation <br />1- Personal:<br />The organization chart: staff, advisory board and consultants.<br />2- Processing and equipment:<br />Data processing procedures, and hardware and software manuals.<br />3- Patients:<br />Inclusion and/or exclusion criteria. <br />Sources.<br />Confidentiality guidelines.<br />4- Data<br />Definitions and coding.<br />Flow chart of data collection, editing, entry and analysis.<br />Access procedures and reporting to relevant authorities.<br /><br />
  5. 5. C- Quality control procedures<br />Completeness and validity:<br />The aim of any registry is to be complete so as to include all cases in the target population and to be valid for all subgroups of patients. <br />Validity has to be checked with the reliable independent sources of health authority and expressed as the percentage of agreement between registry data and those sources. <br />Rules of quality assurance:<br />1- have to be built-in from the start, <br />2- with an assigned responsible at each point, <br />3- pre-defined standards and procedures for evaluation, <br />4- action / correction procedures and,<br />5- feed back loop to inform data handlers.<br /><br />
  6. 6. Inclusion and exclusion criteria have to be clear and unambiguous so that people involved in case-finding will make consistent decisions about inclusion across the range of potential cases that arise. As example, specifying test values or laboratory results as an inclusion criterion rather than a diagnosis.<br />Ascertainment is the method(s) used to locate persons to be included in the registry. We should identify: a) its sources, b) whether it will be active or passive or some combination of the two and, c) method of enforcementof reporting cases:by request, legislative mandate or better by administrative rules directed by legislative mandate.<br /><br />
  7. 7. The clearness of the purpose of registry ensures that all but only necessary data are collected since the start, knowing that changing data collection with time creates confusion and bias in data sets.<br />A golden advise is to keep data collection as simple as possible to reduce effort and cost, maximize compliance and later on, to reduce the time taken to incorporate these data into the system. <br />Plan linkage with other registries and information systems by being in conformity with definition of data elements to avoid wasting effort in recoding, reformatting and merging. Remember that coding of categorical variables is a source of big bias. <br /><br />
  8. 8. This is the part that consumes the major portion of resources. It represents the key area to maintain data quality and hence, has to be correctly and clearly defined, implemented and verified.<br />Data are either abstracted from a health provider's records or directly collected through forms to reduce time, cost and especially errors. <br />a pilot phase allows re-truncation of abstracted records and permits checking the representativeness of forms to the information in question.<br /><br />
  9. 9. The analyzed registry findings have to be fitted in reports that fulfill the goals of the registry, and<br />We have to have a policy and a mechanism on how those reports are disseminated to relevant audiences so as to satisfy the purpose of the registry.<br />Accessto registry data and maintaining confidentiality are related and not necessarily conflicting issues and we have to have a clear policy and mechanism of responding to requests coming from non-authorized sectors.<br /><br />
  10. 10.<br />Thank you<br />