Research into CLL.

[Kwenda]

Research into CLL.

I believe that most readers of this website would agree that more research should be done into CLL. And this is particularly true when one considers that CLL does have a small proportion of inheritability.

Thus we would assume that any medical research is published for ALL researchers to study. This could be both the development of a new drug OR the results of a study that failed. There being no point in further investigations down this research path, but better to try a different route.

However all research is NOT presently published, and there is a major worldwide movement to make this happen.

Below I show a news release and a link to a website. If you believe in this idea then you can add your voice to the movement.

Dear Friends

Support for AllTrials around the world is growing and we need to keep it that way as we reach some crucial debates.

The European Medicines Agency’s proposed policy on publishing and sharing information from clinical trials is open for comment until 30thSeptember. Many of you have been involved in getting your organisations to sign up in support of AllTrials for all trials registered and all results reported. The EMA’s proposals will help to make that happen. But organisations that want to slow or restrict transparency are already making their views known. Please send comments to the EMA before the deadline. Even if you can only comment briefly, please do. It is vital that they hear from the range of bodies and individuals who want an end to hidden trials. We will publish our response next week and share it with you in case that helps.

Last month we published the AllTrials manifesto, which sets out challenges that regulators, companies, researchers, professional bodies, journals and others are addressing (or should be) to make sure that all trials are registered and results reported. There have already been meetings, discussions and documents enlarging on some of the points in there, such as how registries can work together to cross reference registered trials and what journals, funders and ethics committees can do to check up on registration.

We’re going to link these into the document and map out progress in different parts of the medical research system. Meantime, here is some of the news:

• In the UK, the Health Research Authority is about to implement its new policy to ensure all UK clinical trials are registered in a publicly accessible database. From 30th September it will be a breach of good research practice to fail to register a clinical trial.

• PLOS Medicine announced that it will now consider retrospectively registered trials for publication.

• The British Pharmacological Society and the American Society for Pharmacology and Experimental Therapeutics have announced theirsupport for the publication of negative findings from early clinical trials.

• A new paper in the BMJ shows that only 28% of medical journals require a clinical trial reported in their pages to be registered.

• Trial registries around the world are going to work together to identify practicable ways to complete missing trial information.

We put campaign news onto our website at alltrials.net every day. We are just about to move on making the website, which we put up in a rush at the start, a more rapid and comprehensive way to keep up with the campaign developments across the world. If you have been visiting it and have suggestions please email in the next few days.

alltrials.net

Dick

[Kwenda]

UPDATE..............

Congress requires publicly funded research to be publicly available

The new Omnibus Appropriations Bill, which Congress passed yesterday, contains an important -- and fantastic -- provision: it requires that scientific research funded by the Departments of Labor, Health and Human Services, and Education be placed in a free online repository within 12 months of their publication in a peer-reviewed journal.

There are some caveats (this only covers research from agencies with budgets of $100M or more) and it could have been better (immediate publication and all work placed in the pubic domain), but this is still a major stride forward. To be frank, it's well beyond what I'd hoped we'd get from Congress, who are traditionally more than willing to let private firms wall away pubic access from the research that tax-payers fund.

Here's the inside dirt from the Electronic Frontier Foundation's Adi Kamdar:

This is big.

Previously, the National Institutes of Health was the only government agency with a statutory public access mandate.

Last year, the White House Office of Science and Technology Policy (OSTP) made moves in this direction by requiring agencies with similar research budgets to formulate, and eventually implement, their own public access policies. While the OSTP memorandum was a heartening step in the right direction, ultimately these crucial practices must be set down in the law, so they cannot be decimated at the whim of a future presidential administration.

Having another public access law on the books is surely cause for celebration—and hats off to all of those who have been fighting the open access fight—but we shouldn't stop here.

Ultimately, we want to make sure that the public has full access to taxpayer funded research.

The Fair Access to Science and Technology Research Act (FASTR) would go beyond the provisions laid out in the Omnibus bill by mandating a six-month embargo until research funded by a larger number of departments and agencies is made publicly available online.

Contact your members of Congress today and tell them to support FASTR.

Newly Passed Appropriations Bill Makes Even More Publicly Funded Research Available Online

eff.org/deeplinks/2014/01/n...

washingtonpost.com/blogs/po...

Dick