MeSci
ME/CFS since 1995; activity level 6?
- Messages
- 8,231
- Location
- Cornwall, UK
This is notably relevant to the PACE studies. I am pasting the whole message from AllTrials:
Dear Friends
Today the new head of pharmaceutical company Lilly UK Jean-Michel Cosséry said that patients don’t want companies like his to spend their money sharing “old data.” These “old data” are, of course, the results on which all treatments in current use are based! Perhaps he is hoping that AllTrials can be headed off into a siding, like all previous attempts to establish transparency.
A committee of MEPs will soon vote on proposals that would increase transparency of clinical trials. However, there are 350 lobbyists for the pharmaceutical industry at the European Parliament. MEPs are hearing Cosséry’s arguments against transparency (and others) every day. We have until 29th May to make sure they hear our arguments.
If you are in Europe:
The committee looking at the clinical trial regulation has 67 MEPs from 22 different European countries. Their names, the countries they represent and their email addresses can be found here. http://www.europarl.europa.eu/committees/en/envi/members.html#menuzone
Please write to the MEP(s) from your country telling them why you want increased transparency. Let us know if you have written to them and if you get a response.
If you are not in Europe:
We know these kinds of discussions are going on with every regulator around the world. Please talk to us about how AllTrials can take off in every country.
Best regards
Síle
www.AllTrials.net
Dear Friends
Today the new head of pharmaceutical company Lilly UK Jean-Michel Cosséry said that patients don’t want companies like his to spend their money sharing “old data.” These “old data” are, of course, the results on which all treatments in current use are based! Perhaps he is hoping that AllTrials can be headed off into a siding, like all previous attempts to establish transparency.
A committee of MEPs will soon vote on proposals that would increase transparency of clinical trials. However, there are 350 lobbyists for the pharmaceutical industry at the European Parliament. MEPs are hearing Cosséry’s arguments against transparency (and others) every day. We have until 29th May to make sure they hear our arguments.
- The trust of patients who have volunteered for clinical trials is betrayed when findings generated by their participation are locked away
- Incomplete information means doctors could make bad treatment decisions and miss opportunities for good medicine
- Researchers don’t know what was found in previous trials, or even that some trials happened, so trials are repeated unnecessarily
If you are in Europe:
The committee looking at the clinical trial regulation has 67 MEPs from 22 different European countries. Their names, the countries they represent and their email addresses can be found here. http://www.europarl.europa.eu/committees/en/envi/members.html#menuzone
Please write to the MEP(s) from your country telling them why you want increased transparency. Let us know if you have written to them and if you get a response.
If you are not in Europe:
We know these kinds of discussions are going on with every regulator around the world. Please talk to us about how AllTrials can take off in every country.
Best regards
Síle
www.AllTrials.net