We are delighted to announce that today AllTrials USA has officially launched. Today 50 patient support groups, medical societies, universities and consumer groups are coming together to launch the AllTrials campaign in the US and to say:

“We are calling on everyone in our sector to join us in supporting the AllTrials campaign. Hundreds of thousands of patients have taken part in clinical trials which have never reported results. For every day that passes, more information is at risk of being lost forever. We have to make every clinical trial count. Join us today.”

See the list of US organisations that have joined here.

Patient activist AnnaMarie Ciccarella spoke about patients who volunteer for clinical trials:

“We provided our bodies, our tissue samples, our data. I’ve heard the same sentiment expressed many times from patients in clinical trials, ‘This may not help me, but it may help another person.’ It’s time to honor that sentiment.”

Steven Woloshin MD, Professor at the Geisel School of Medicine at Dartmouth said

“Imagine there was an election. Would you trust the results if only half of the votes were reported? Imagine if the winner of the election was the one who decided which half of the voting was reported? That would be crazy, but that’s what the situation is when trials are not reported.”

Some of the US groups joining today tell us why they support the AllTrials campaign and want others to support it too:

Foundation for Integrative AIDS Research:

“FIAR believes that every individual who offers their life and health, potentially placing both in jeopardy, to participate in a clinical trial should be honored and respected.”

Ovarian Cancer Alliance of San Diego:

“The importance of listing ALL clinical trials results is so vital to saving lives and patient care. We in the patient community cannot wait for research to be delayed from the unsuccessful trials not being disclosed and/or researchers to discover prior findings were flawed after they have attempted to move the research forwarded. Please remember human lives are at stake here and participate in the proper transparency as a fellow human being.”

The Dupuytren Foundation:

“The Dupuytren Foundation enthusiastically supports the AllTrials campaign. There must be both transparency and data access to make real progress in developing better understanding and more effective treatment for Dupuytren disease.”

YWCA Princeton Breast Cancer Resource Center:

“The WHO has demanded, and the YWCA Princeton Breast Cancer Resource Center supports the demand, that all clinical trials are registered in a publicly available, free-to-access database before any trial is initiated and that the main findings of any study are submitted to an open-access, peer-reviewed journal within 12 months of completion, or otherwise be made publicly available within 24 months.”

Association for Pelvic Organ Prolapse Support:

“The AllTrials campaign is a powerful, impactful, pivotal initiative; it is imperative every side of healthcare-patient, clinician, research, academia-have access to any and all research detail. Proactive, informed patients have greater capacity to understand what is occurring within their bodies. The value of complete transparency in all layers of healthcare cannot be overstated.”

Society for Clinical Trials:

“In order to design the highest quality and most ethical clinical trials in the future, we need to learn from and incorporate all past experience.  The Society for Clinical Trials has signed this petition because each study participant deserves to have the data he or she contributed yield the maximum benefit to society.”

The American Psychiatric Association:

“The APA is proud to join the more than 500 international organizations that are supporting AllTrials as sponsoring organizations. The APA supports public accessibility to the methods and findings related to clinical trials, which has direct implications on psychiatric treatments and quality of care. The APA believes a comprehensive registry of all clinical trials, whether publicly or privately funded, will be imperative in demonstrating transparency, reducing selective reporting of findings, and alleviating mistrust surrounding published data on the efficacy and safety of psychiatric medications for children and adults with mental disorders.”

The American College of Physicians:

“The American College of Physicians supports the principles of clinical trial transparency embodied in the AllTrials campaign. Clinical trials should be registered before the start of patient enrollment and results of all trials should be reported within a reasonable time after study completion in either a trial registry or a peer-reviewed publication, or both.”

Northern California Regional Organization of Child and Adolescent Psychiatry:

“Clinicians, and the families they serve, need and deserve sufficient access to all relevant information in order to make the best decisions possible. Nowhere can this need be more important than in the care of children, particularly those who may be dealing with mental illness. NCROCAP strongly endorses the All Trials Campaign.”

The American Medical Student’s Association:

“The AMSA strongly endorses the AllTrials Campaign to make available all clinical trial results for all treatments being currently used. AMSA signs onto the AllTrials petition as a crucial step to ensure that the lives of our patients and the integrity of our profession are protected.”

National Physicians Alliance:

“Clinical trial results are bedrock to sound treatment decisions.  Physicians and patients need to know what they yield.  Trial secrecy betrays the trust not only of those who expect their participation to help future patients, but of the broader scientific community dedicated to curing disease.”

The AllTrials campaign has achieved a lot in Europe in the last two years, but changes to culture and practice of clinical trial reporting need to be global to be successful. A vibrant public campaign that puts the issue on the agenda in the US is going to be vital to achieve the changes needed. We are very excited that Sense About Science USA will be running the US AllTrials campaign, alongside the 50 organisations that have already joined up.

If you would like to sign the petition on behalf of an organisation, email your organisation’s logo and a statement to jcockerill@senseaboutscience.org or alltrials@senseaboutscienceusa.org

To make a donation to the AllTrials campaign, please click here.