“In any case it would far exceed the cost of setting up and maintaing a World Wide Tx outcomes database,and at least the numbers would be there to start plotting some really meaningful charts.”
This is actually happening at a local level in the UK with plans to join up the data country wide. My local hospital asks for voluntary, anonymous participation in the collection of hepC treatment data. The understanding is that this data will be used to inform treatment in the future. It is however still early days and data collection takes time. The need for comprehensive data somehow always exceeds the availability of it.
Data collection was also done during the time that ifn + riba was all that there was. Over those years a lot was learned about how to refine the treatment. The fact that ribvirin action is still not fully understood is not because of a lack of data or failure to study it.
Anyway, I do agree that data collection is very important. What concerns me more is who has access to it, and how is it used? Give a statistician a database and you can get almost any conclusion out of it that you want. There are powerful interests out there who like to start with a conclusion and work backwards to the data needed to prove it. So if you are looking for unbiased, meaningful charts then they could be hard to get, but we have to try. If you are looking to get over the “insufficient data” condition, I don’t think that will happen any time soon.
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