Drug trials and the release of ALL the data. - CLL Support

CLL Support

23,253 members39,949 posts

Drug trials and the release of ALL the data.

Kwenda profile image
5 Replies

When a drug trial does not produce the expected result the research can be shelved and become unavailable.

There is a movement to force drug companies to release all data for the public good and to speed up research.

In the UK the Alltrials group responded to the House of Commons Science and Technology Select Committee report on clinical trials bit.ly/19aDR4J (Please share this link with colleagues and friends on Facebook, Twitter etc – they may not have signed the petition at AllTrials.net).

There are more details on the website bit.ly/19ZRxAv and we would welcome further views on the Committee’s recommendations, particularly on their proposals on making information from past trials available.

As you will see in the comments under my article, there is quite a bit of misunderstanding about the value of publishing clinical trial results, which we will all have to work on.

Further details on their website at :- alltrials.net

Dick

Written by
Kwenda profile image
Kwenda
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Mikey47 profile image
Mikey47

Yes, I'm signed up and had an e-mail update a few days ago. Posted on facebook too.

Done ! Hope everyone understands how important this is to us.

Bub

ygtgo profile image
ygtgo

Signed up last night ....

Kwenda profile image
Kwenda

An update for those in the EU on this campaign.

The web page links are listed at the end.

If you live in an EU member state we need your help this week. Will you write to your country's health minister to ask your Government to support the good progress towards clinical trial transparency in the draft Clinical Trial Regulation in debates in Europe next month.

Thanks to the letters you sent to MEPs last May some very good additions were made to the draft Regulation. These new parts of the law would mean that all clinical trials taking place in Europe would have to be registered and summary results published within a year of its ending. We need to make sure that these good additions make it into the final law, and we don't have much time as the next stage of the process starts in the first week of November.

The next stage is a series of 'trilogue' discussions between the European Parliament, Commission and Council. We understand that the European Council hasn't decided its position yet. The Council is made up of representatives of all of the individual Governments of European countries so your Government's position is very important. There's no time to lose - please write to your health minister this week and urge them to support the good additions to the Clinical Trials Regulation.

What you need to do now

You'll find a sample letter here including details of the specific parts of the Regulation that we need Governments to support, and details of how to contact your health minister on this page.

If you can translate the letter into more European languages, please get in touch.

AllTrials fundraising appeal

We have launched a fundraising appeal for a video to spread the AllTrials campaign around the world. Please donate to help us produce that.

Links repeated.

alltrials.net/write-a-lette...

alltrials.net/write-a-lette...

alltrials.net/how-to-contac...

alltrials.net/contact/

Dick

Kwenda profile image
Kwenda

The international push to get drug companies to share patient-level data from their clinical trials got another shot in the arm Monday with the publishing of two papers in the New England Journal of Medicine.

For years, pharmaceutical industry reformers have said that drug companies should be required to release individual patient data -- with protections to preserve privacy -- as means to ensure more transparency about the true safety and effectiveness of treatments.

Summary which requires a free log on at :- medpagetoday.com/PublicHeal...

Dick

Not what you're looking for?

You may also like...

Reflections from Cardiff, news of CLL research and the changing trials landscape

Hi everyone After reflecting on yesterday's Cardiff CLLSA patient meeting and...
HAIRBEAR_UK profile image
Founder Admin

Dr. Wierda on the Importance of Clinical Trials

I’m home from the European Hematology Association Congress in Copenhagen. I received very positive...
bkoffman profile image
CLL CURE Hero

For our USA Members: Calculating the Costs of Clinical Trials

Probably a must read if you’re considering a trial in USA. “Patients eager to contribute to...
Jm954 profile image
Administrator

Why we need to share [u][i]All Data[/i][/u] from clinical trials

"In 2001, a “landmark” study published in the prestigious Journal of the American Academy of...
AussieNeil profile image
Partner

Starting CAR-T therapy for my relapsing CLL

Friends and CLL Society supporters: This isn't easy. After consulting with my wife, my family, my...
bkoffman profile image
CLL CURE Hero

Moderation team

See all
Newdawn profile image
NewdawnAdministrator
Jm954 profile image
Jm954Administrator
AussieNeil profile image
AussieNeilAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.