MDR Data Sources

To do...

Documentation support

Each data source will require its own unique set of processes to extract the data and pass it on to the aggregation process, and these will therefore need to be documented.
One approach to documentation would be to use the points listed above to structure a document list. Together with introductory information, this creates a list that covers:

• The nature of the data source, including its size and scope.
• Any legal or other constraints on the use / re-use of the data, and the arrangements put into place by ECRIN to ensure legal requirements have been met.
• A description of how relevant data will be identified and selected (if it can be) in the source data system.
• The structure of the source data, including the identification of the data points that will be extracted, either because they will form part of the final ECRIN dataset or because they can help in its processing and tracking (or in some cases because they may be potentially useful in the future, even if not required now).
• The processes by which the raw data (e.g. the retrieved XML, JSON or files) is filtered / extracted / transformed into the session data, including the coding that is applied. Thius should include or reference a detailed description of the session data tables.
  
• The comparison mechanisms that take place to turn the sd table data into ad table data, providing (or referencing) a detailed description of the ad tables.
• How the ad data, once transferred into the aggregate databases, is processed and compared to identify possible duplicates, integrate data points, and establish final identifiers.
• (Periodically), the numbers of records imported and transferred into the core MDR system, and the nature of those records (e.g. data object types).

In many cases some of the documents listed above could be combined.



ClinicalTrials.gov

Pubmed

EUCTR

ISRCTN

WHO

BioLINCC

Yoda