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Transplants Open Registry (        )

          PT

 

This registry is a private initiative from 'Oficina de BioEstatística' and, as such, liabilities for all conclusions that may be made available are on his author.

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Author's Disclaimer

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All content provided by TxOR should be used for research purposes only and never to make clinical decisions regarding patients' care.

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Whereas this registry attempts to provide high-quality information it does not offer any guarantee about its accuracy.

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TxOR's purposes

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  • Collect open data on transplantation and make it available in a transparent and accessible way to all it may concern.

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  • Collect data from donors, transplant candidates and transplanted patients allowing scientific research and consequent results' dissemination.

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  • Carry out statistical and epidemiological analyzes with open data on transplantation to generate knowledge.

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  • Define organ allocation algorithms that guarantee equity of access to a scarce good resource as organs for transplantation.

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  • Provide accurate, clear and transparent information on transplantation activities in Portugal.

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  • Enable decision-making based on evidence of data.

TxOR's Chief Data Scientist

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Those who do data analysis have to gather two characteristics: "business" knowledge and "art" mastering.

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CDS from TxOR, first of all, have to know what transplant is about. He should also be able to generate knowledge about patients' access to transplantation conditions.

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CDS is also responsible for mastering areas of programming (namely R language), mathematics (in particular statistical sciences that allow data modelling and algorithms definition), and database management (primarily SQL) for data extraction, transformation and loading (ETL process), so it can be made available and / or analyzed.

Definitions

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  • Data - values, records, observations or occurrences in a raw state. When presented in a spreadsheet (with identified columns and rows), are called structured data. Examples: cadaveric donor's age; renal transplant candidate's time on dialysis; transplanted patient's blood group.

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  • Information - message generated from a set of processed data. Examples: mean age of a deceased donors group; median time on dialysis until transplantation of a group of waitlisted candidates; bar chart with the relative frequencies of the blood groups of a set of transplanted patients.

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  • Knowledge - Dissemination of the experience gained with the ability to process a set of information. Example: an article published in a scientific journal.   

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  • Open data - data that can be accessed, processed, reused, modified and shared by anyone and for any purpose without any restrictions.

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