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Comments from organisations
Medical Research Council: The MRC is pleased to sign up to this campaign and has, for many years, strongly supported the position that clinical trial results must be published in a timely manner. At the end of 2012, we made both the requirement to publish, and the need for MRC-funded researchers to share data, even more explicit: “results of MRC-funded clinical studies (whether positive or negative) must be published within a reasonable period (generally within a year of completion) following the conclusion of the study. Results should be reported in accordance with the recommendations in the CONSORT statement [Schulz et al. BMJ 2010; 340: c332]. Data should be made available in line with the MRC Policy on Data Sharing” The MRC celebrates its centenary this year and it would be surprising if, in our one hundred year history, there were no unreported or unpublished skeletons in our cupboards. However, tools such as e-Val (developed by the MRC and the precursor of ResearchFish) and Gateway to Research will mean funders such as ourselves will find it far easier to monitor adherence to the policy.
Wellcome Trust: The Wellcome Trust is pleased to sign this petition. We support full and unrestricted access to the outputs of research, including clinical trials, and consider this to be a key component of the research pathway and of our vision to achieve extraordinary achievements in human and animal health. The full statement is available here
NICE: We strongly believe that all clinical trial data should be made available so that those with responsibility for developing guidance and making treatment decisions have all the necessary information to hand to help them do so safely and efficiently.
Health Research Authority: The Health Research Authority, and National Research Ethics Service, now part of the HRA, have long endorsed the registration of research and subsequent publication of research results. We are delighted to sign up to the petition, which is entirely consistent with our remit to protect and promote the interests of patients and the public in health research.
German Institute for Quality and Efficiency in Health Care: IQWiG supports the campaign for all trials to be registered and the full methods and the results to be reported. IQWiG prepares health technology assessments to support decision making in the German health care system. During the past years we have experienced that full availability of all clinical trials and all information on methods and results of these trials is essential for us to provide unbiased and meaningful assessments. Health technology assessment should be based on a full evidence base and thus requires registration and reporting of all trials, regardless of whether they are conducted by industry, academia, governmental organisations or others.
South African Medical Research Council: The vision of the SA MRC is to build a healthy nation through research. Unregistered clinical trials and unpublished, inaccessible results of research pose a barrier to achieving this vision. The SA MRC has long supported the importance of minimising publication bias. We provide a home for the Pan African Clinical Trials Registry (www.pactr.org), a WHO recognised register which has specific capability to serve researchers, decision makers and patients in Africa. We are pleased to add our signature to this AllTrials petition and support the call for open access to the results of all clinical trials.
GSK: We are pleased to sign up to the AllTrials campaign for clinical trial transparency and support its call for the registration of clinical trials and the disclosure of clinical trial results and clinical study reports (CSRs). The full statement is available here
British Medical Association: The BMA is pleased to sign the AllTrials petition. Doctors need accurate and unbiased information on the efficacy and safety of different treatments to help them prescribe properly, safely and most effectively for their patients. If data from clinical trials are withheld or otherwise not available, doctors cannot be sure of the risks and benefits of using particular drugs thus risking avoidable harm to patients and wasting scarce NHS resources. The full statement is available here
Royal Society of Medicine: As an organisation whose mission is concerned with providing education for healthcare professionals, the Royal Society of Medicine strongly supports the concept that the results of all clinical studies should be placed in the public domain. Without this, patients run the very serious risk of receiving suboptimal clinical care.
Royal Statistical Society: The Royal Statistical Society is committed to transparency in scientific and social research. It is crucially important that the results of scientific research be made publicly available and disseminated as widely as is practical, in a timely fashion. Decisions to publish should not be based on whether research findings are ‘positive’ or ‘negative’.
Royal College of Pathologists: Openness and transparency are essential in research so that patients, policy makers and health professionals can make decisions vital to health care based on sound evidence. Pathologists are in the vanguard of healthcare research, especially in the area of precision diagnostics, the basis of personalised medicine. The Royal College of Pathologists is pleased to be able to support this important campaign.
Royal College of Paediatrics and Child Health: Over the last few years public confidence in some of our great institutions has been damaged by a series of scandals and cover-ups and this has created an even more profound obligation on all of us working in the healthcare sector to be as transparent and open about the work we do. The pharmaceutical industry has and will continue to have a central role in developing effective products for licence as medicines but to maintain the trust of the public it has to do so on the basis of full publication of research trials so that any decisions to licence or use them can be made fully informed of all the evidence.
Royal College of Physicians of Edinburgh: RCPE has long supported the concept of evidence-based medicine through our founding and support for the Scottish Intercollegiate Guidelines Network (SIGN) and our links with the Cochrane Collaboration and James Lind Initiative. The College commends the objectives of the petition to call for greater transparency in the reporting of methodology and results from all clinical trials.
Royal College of Obstetricians and Gynaecologists: The RCOG encourages the study and advancement of the science and practice of obstetrics and gynaecology. We do this through postgraduate medical education and training development, and the publication of clinical guidelines and reports on aspects of the specialty and service provision. The RCOG Global Health Office works with other international organisations to help lower maternal morbidity and mortality in under-resourced countries. To fulfil this role, the College promotes study and research into obstetrics and gynaecology and publishes the results. The RCOG is happy to champion the All Trials enterprise which can only increase awareness about clinical trials.
Faculty of Pharmaceutical Medicine: The Faculty of Pharmaceutical Medicine has signed up to the AllTrials campaign as we believe that the increased scrutiny of clinical trial results and data will lead to enhanced and more rigorous science, and ultimately better health outcomes for patients. The Faculty has shown a longstanding commitment to the publication and dissemination of trial data through our ‘Guiding Principles for Pharmaceutical Physicians’, and we see the aims of the AllTrials campaign as being closely aligned to this commitment.
Faculty of Public Health: The Faculty of Public Health has over 3,300 members, all of whom are trained to find evidence-based solutions to complex problems. We strongly support AllTrials’ call for all trials to be reported and scientific data to be more fully in the public domain. Previous cases of suppressed evidence include the links between some SSRI antidepressants and suicide, as well as research into COX2 inhibitors and cardiac failure. These show us how vital it is that all research data is available in the public domain so that we can protect the public from harmful side effects of drugs. When making potentially life or death decisions about people’s health, our members need access to all the relevant data, not just the information people may choose to publish.
Cochrane Collaboration: The Cochrane Collaboration strives to produce high quality, timely systematic reviews to help patients, clinicians and others make decisions based on the best available evidence. The success of these endeavours is seriously weakened if those preparing reviews cannot access all the relevant information. When data are missing, this poses a real threat to patients. The risks and benefits of treatments cannot be properly evaluated in an unbiased way. It is vital that all clinical trials are registered and all results reported, regardless of what those results are.
COPE: COPE supports the AllTrials initiative for all trials to be registered and all results reported. Publication ethics is not just about such issues as prevention of plagiarism and managing conflicts of interest, but is, more widely, about ensuring the integrity of the scholarly literature. Registration of trials and full reporting of results is a critical step in counteracting the bias towards positive results in the medical literature.
World Association of Medical Editors: WAME seeks to promote the highest standards in conducting, reporting, and disseminating medical research in the service of improving personal and public health worldwide. To this end, WAME lends its full support to the AllTrials initiative, extending WAME’s policy that all clinical trials should be registered (http://www.wame.org/
PLOS: PLOS strongly endorses Alltrials’ call for all trials to be registered and reported. It not only resonates with our core values but, moreover, at PLOS we provide specific, concrete ways that the call can be turned into action. As an open access publisher, PLOS was founded on the principle of increasing the availability of both papers reporting studies and the underlying data associated with studies and as has strong policies on data availability. From the very beginning of medical publishing at PLOS, in PLOS Medicine in 2004, we have always insisted on the prospective registration of trials and that protocols for clinical trials are submitted with the trial paper and published alongside it. In addition, we have a specific commitment to publishing the results of so-called negative trials, particularly in our journal PLOS ONE, which does not select papers on impact, but only on objective measures such as whether the work is done to high scientific and ethical standards, whether the work is appropriately described, and whether the data support the conclusions.We therefore welcome this new initiative and call on other publishers and medical journals to develop ways to make universal registration and reporting a reality, rather than just an aspiration.
British Library: Enabling access to everyone who wants to do research is a key aim for the British Library. We therefore support initiatives that enable people to have access to the evidence and make informed decisions, as a result.
Global Health Information Network: The Global Healthcare Information Network, which administers HIFA2015 and other HIFA Global Forums, supports the AllTrials proposal that ‘All trials past and present should be registered, and the full methods and the results reported’. Full transparency is necessary to ensure that health professionals have access to the best possible evidence on which to base their decisions. Adequate support should be provided for research in low-income countries to ensure that trial data are robust and readily available
British Pharmacological Society: The British Pharmacological Society (BPS) today announces its intention to sign the All Trials petition, www.alltrials.net. This decision underlines the Society’s unqualified commitment to the principles of transparency in clinical trials, which has been a central theme of its collaborative work with organisations in health and commercial life science settings for a number of years. The full statement is available here
Royal Pharmaceutical Society: The English Welsh and Scottish Boards have announced today a commitment to increased clinical trial transparency through active membership of the AllTrials campaign. The full statement is available here
BioMed Central: Publication bias is a serious problem in medical research and increasing transparency in clinical trials reporting is important. Open access publishing and public registration of trials offer the tools to help improve the reliability of medical evidence. All BioMed Central’s medical journals require prospective registration of clinical trials as a condition of publication, and we operate the ISRCTN register, one of the world’s largest trial registration databases. Many of our journals, including Trials journal, actively encourage the publishing of all research results, positive and negative, in addition to trial protocols. The AllTrials campaign comes at a time when there is much needed attention on the problems of reliability in medical research and we are looking forward to working with the campaign and like-minded organizations to leverage this momentum for the benefit of science and, ultimately, patient care.
Association of Medical Research Charities: Medical research charities support the registration of clinical trials and the publication of findings. The full statement is available here
Patients Involved in NICE: PIN is pleased to support the AllTrials campaign to ensure the full details of all clinical trials, past and present, are reported and made available to regulators and clinicians. The full statement is available here
Drug and Therapeutics Bulletin: DTB supports the campaign for all trials to be registered and for all results to be reported. DTB believes that the availability of such data is essential to ensure that medicines are used safely and effectively. With very few exceptions, DTB only uses source material that is published (or, very occasionally, ‘in press’). We closely ally ourselves with our readers and so only use data in the public domain. In this way, the basis for the conclusions is available to our readers for independent assessment.
GIMBE Foundation: The Gimbe Foundation strongly supports the AllTrials initiative for three reasons. First, 21 years after the birth of the EBM it is now time for a true (and not a selectively published) evidence base to inform all professional, managerial and political decisions. Secondly, the selective or missed publication of trials clearly breaks the pact with participants, that through informed consent accept to join the trial to improve knowledge about treatments’ effects on specific conditions. Last, but not least, under-reporting of research leads to a waste of money, as unpublished results will never lead to public health improvements. By ensuring that all trials will be registered and all results will be published, the investments in clinical research will finally turn into real benefits for citizens’ health.
Open Knowledge Foundation: The Open Knowledge Foundation strongly endorses the All Trials campaign. We believe that this kind of essential information about the world should be free for everyone to access, scrutinise and share.
American Medical Student Association: AMSA strongly endorses the AllTrials Campaign to make available all clinical trial results for all treatments being currently used. For over a decade, AMSA has been advocating for medical education and practice that is evidence-based, rather than marketing based. Evidence-based medicine, however, is not possible with the continued allowance of pharmaceutical and device industries to hold hostage key clinical trials that may impact a prescriber’s decision-making ability. 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.
Center for Information and Study on Clinical Research Participation: CISCRP has long supported transparency and its critical role in engaging all stakeholders in the clinical research enterprise. This important initiative is a crucial step in helping to restore public trust and supports CISCRP’s mission to communicate clinical trial results to all volunteers who give the gift of their participation to advance medical knowledge.
UK Research Integrity Office: UKRIO supports the AllTrials petition. We have always stressed – through our practical advisory service, our education and training, and our publications – that all research should be conducted to the highest standards of honesty, accuracy, integrity and accountability. The full statement is available here
Association of Research Ethics Committees: AREC is an independent, self-governing body of Research Ethics Committees, local and multi-centre, including their members and administrators. AREC supports the AllTrials initiative for all trials to be registered and all results reported. Research ethics includes ensuring that studies involving human beings are published and all results, positive and negative, disseminated.
UK Clinical Pharmacy Association: Clinical pharmacists, like other healthcare professionals, rely on the transparent reporting of clinical trial data in order to achieve the best possible outcomes for patients. This aim cannot be achieved if the published evidence base is incomplete or inaccessible. The United Kingdom Clinical Pharmacy Association believes that the call to publish all available trial data is a simple call to fulfil an obvious moral obligation
Macmillan Cancer Support: If patients are to be offered the right care, all information about drug trials should be published and available for scrutiny, not just the data which presents a new treatment in the most favourable light. This is currently not happening, and people have been unnecessarily harmed because of it. It is particularly important for cancer patients, as a large proportion of new drugs in the pipeline are cancer drugs.
Cancer Research UK: Cancer Research UK is pleased to sign up to the All Trials campaign, and we welcome the public discussion on how to increase transparency in clinical studies. The full statement is available here
Teenage Cancer Trust: Teenage Cancer Trust would welcome measures to bring more transparency to clinical trials.
Marie Curie Cancer Care: Marie Curie Cancer Care is pleased to sign the AllTrials petition calling for greater transparency in clinical trials. Publicly available trial results, whether positive or negative, will lead to better clinical decisions and better quality of care. This closely aligns with the charity’s aim of putting patients and families first.
Irish Cancer Society: We are absolute in our belief that all clinical research data be published in order that people who get cancer, or any other medical condition, will have better access to improvements in the diagnosis and treatment of their condition which will lead to better medical care and better outcomes. Cancer patients lives are dependent on this.
Cancer52: Cancer52 supports the AllTrials petition calling for all clinical trials to be registered and results to be published because people with rare and less common cancers need access to clinical trials and new treatments. To deliver on this we need to see the results, good or bad, of trials that have gone before.
British Heart Foundation: The British Heart Foundation is the nation’s heart charity, dedicated to saving lives through pioneering research, patient care, campaigning for change and by providing vital information. We are pleased to support the AllTrials initiative and its efforts to increase transparency in clinical trials. As a major funder of heart disease clinical studies, including ground-breaking work like the Heart Protection Study, we recognise the need to ensure patients and clinicians have confidence in the outcome of clinical trials. We have established our position in our response to the Science and Technology Select Committee’s inquiry on clinical trials. To find out more about our life-saving research funding visit bhf.org.uk/science.
HealthWatch: HealthWatch is a UK charity which was registered in 1991 to promote evidence-based medicine, quality information about health, and fair tests of health treatments. These principles save lives. Biased information resulting from selective publication of data has resulted in thousands of unnecessary deaths. Furthermore, non-publication of data is a violation of the informed consent process in which patients agree to take part in research believing it to be for the advancement of medical science. Those responsible for making healthcare decisions need to have at their disposal all possible evidence, which means they need ready access to all data resulting from fair tests of treatments. For these reasons HealthWatch is pleased to add its support to the AllTrials campaign.
European Federation of Clinical Chemistry and Laboratory Medicine: EFLM represents the National Societies practising Laboratory Medicine in Europe, a specialty said to contribute in up to 70% of medical cases. Thus we affirm that adherence to ethical standards and the dissemination of all scientific data to inform clinical decision making is axiomatic for the provision of the quality health care that patients expect; EFLM fully supports the tenets of Evidence Based Medicine.
European Public Health Association: The European Public Health Association, representing over 14,000 public health professionals across Europe, is committed to the highest standards in the conduct and reporting of research. We endorse the view that all trial protocols and data are made publicly available for independent and critical appraisal.
Swedish College of General Practice: SFAM, strongly endorses this campaign. SFAM promotes professional education, research and development in general practice. We work for the practice of evidence based medicine and for rational pharmacotherapy in cooperation with our patients. To achieve this, we regard it as fundamental that all trial protocols and results without exceptions are made publicly available for independent and critical appraisal.
NEPI Foundation: The NEPI foundation, a non-profit organization established by the Swedish Parliament in order to facilitate the development of pharmacoepidemiology, supports the AllTrials initiative since openness and transparency with regards to research results constitute a foundation for comparative-effectiveness research. The practice of evidence-based medicine is not possible if research groups and companies can withhold results from scrutiny by the research community.
Netherlands Epidemiological Society: The Netherlands Epidemiological Society fully supports the AllTrials initiative and is therefore pleased to sign this petition. Access to results, especially from clinical trials, is needed to reach unbiased conclusions.
Asociación Española de Pediatría de Atención Primaria: AEPap https://www.aepap.org/ representing more than 3000 pediatricians across Spain, is proud to endorse the AllTrials campaign. We are committed to transparency in research so that the best treatments for children can be developed and evaluated, and it is vital that all clinical trials are registered and the results reported.
Muscular Dystrophy Campaign: The Muscular Dystrophy Campaign is pleased to support the AllTrials petition calling for all clinical trials to be registered and results to be published. The full statement is available here
London School of Hygiene & Tropical Medicine: The London School of Hygiene & Tropical Medicine supports full open access to the results of research, including clinical trials. The full statement is available here
Leukaemia CARE: Leukaemia CARE is pleased to sign this petition backing the AllTrials campaign. We fully support unrestricted access to the results and outcomes of all clinical trials; calling for the registration, disclosure and transparency of all clinical research (clinical study reports and clinical trials) regardless of whether the results are negative or positive.
Norwegian Cancer Society: The Norwegian Cancer Society whole-heartedly supports this petition. As a big funder of research, we would like the money to be put to good use. We believe in sharing and documenting results to better advance the research. We believe that easy access to previous research in a timely manner will help the researchers help patients get better treatments quicker. We strongly support the sharing of methodology and results.
Parkinsons UK: We believe that the results of every Parkinson’s trial should be made public regardless of the findings. That’s why we’ve signed up to support the All Trials Registered, All Results Reported campaign. We’re also working closely with other research charities to make sure that new rules being developed to govern clinical trials across Europe – the EU Clinical Trials Regulation – make reporting results mandatory.
Brain Tumour Charity: The Brain Tumour Charity supports the AllTrials petition calling for all clinical trials to be registered and results to be published. We believe that this is necessary to ensure that potential new treatments move into clinical trials and the clinic as quickly as possible and that patients obtain the most benefit from the results of previous trials.
eLife: eLife enthusiastically supports AllTrials’ call for all clinical trials to be registered and reported. The last decade has seen a revolution in open-access publishing of scientific articles to audiences as wide as possible. eLife is dedicated to advancing scientific excellence and also access to the best science. In this spirit, AllTrials’ efforts to ensure full reporting of clinical trials are consistent with the goals of eLife. Rapid review processes, fair scientific scrutiny by scientists and the use of additional web-based materials and open-access methods ensures that eLife is well placed to meet AllTrials related objective of fast and fair publication of key clinical trial results. We therefore welcome AllTrials and call on other journals to support this important new initiative.
Stop AIDS Campaign: The Stop AIDS Campaign exists to provide universal access to effective HIV prevention, treatment, care and support. We believe in evidence-based medicine and full access to information to ensure better health outcomes for patients globally. We are therefore pleased to endorse the AllTrials Campaign which aims to ensure full transparency in clinical trial data, enabling informed decision-making and ultimately major improvements in global health.
UK Sepsis Trust: The UK Sepsis Trust is a registered charity representing the interests of patients with sepsis and their relatives. Sepsis is a complex, deadly and diverse condition which presents in many ways and to many areas of healthcare. This diversity brings a need to bring together all robust data on sepsis identification and management in order that our expert clinicians and patient advisors may work to design the best patient care systems. We welcome and fully support the AllTrials campaign.
Bone Cancer Research Trust: The Bone Cancer Research Trust supports the AllTrials Campaign in their call to see all clinical trial results published and made available to the medical research community and the public.
Stroke Association: Stroke Association are pleased to sign the AllTrials petition. We are committed to transparency in research so that the best treatments can be developed and evaluated, and it is vital that all clinical trials are registered and the results reported.
SABRE Research UK: SABRE Research UK strongly supports the AllTrials Campaign. We go further and call for all trials (clinical and pre-clinical) to be registered and reported. All results (processed and raw with sensitive patient data protected) need to be published in full and with open access. Failure to do so is causing harm to patients and wastes funding. Research is unethical for the participants of clinical research and subjects of laboratory research whenever a trial is not registered and not reported.
Evidence-Based Veterinary Medicine Association: EBVMA is proud to endorse the All Trials campaign. Transparency and accessibility of clinical trial data for all stakeholders is as critical in veterinary medicine as in human medicine. The EBVMA supports the creation of an independent registry for veterinary clinical trials and encourages registration and full reporting of all clinical trials in both human and veterinary medicine. We support an open access publishing model, publication of all trial results whether positive or negative, adherence to high quality reporting standards such as exemplified by the CONSORT and REFLECT statements, and full registration and reporting of clinical trials because these practices are necessary for the effective practice of evidence-based medicine and the highest quality of patient care.
British Society for Gene and Cell Therapy: BSGCT is very happy to support the All Trials campaign. As a society, we strongly believe that the publication of all clinical trials data is critical if we are to accelerate the development of effective, evidence-based treatments for patients. Restricted access to clinical data slows progress and hampers the efforts of research scientists and healthcare professionals. All clinical trials should be registered and the results, whether negative or positive, be made available to researchers and clinicians.
British Society for Immunology: The British Society for Immunology wholeheartedly supports the AllTrials campaign. It is essential that all clinical trials are registered and that methodologies and results are placed in the public domain where they are freely available to all. This will support research efforts and ultimately lead to improved clinical treatment programmes.
Renal Association: The Renal Association is pleased to support this important initiative to ensure that patients and doctors decisions are based on the best evidence.
Rett Syndrome Research Trust: Rett Syndrome Research Trust UK works to accelerate treatment for Rett Syndrome and related MECP2 Disorders. We are pleased to support the AllTrials petition calling for all clinical trials to be registered and results to be published, in order to ensure that potential new treatments can move into clinical trials as quickly as possible.
Depression Alliance: We at DA are pleased to support to the AllTrials campaign. Lack of information about depression, followed by lack of choice in treatments are constant ongoing concerns for our members in being able to maintain recovery. We are signing this petition to improve people’s access to information and support them in making choices over the treatment offered.
Scientists for Labour: SfL is happy to support the AllTrials campaign. Retrospective registration of clinical trials is important for future generations of researchers to build on the successes and failures of the past. Full disclosure of outcomes is also vital for governments trying to make evidence based, economically sound decisions on what treatments are made available to populations. SfL will work to promote AllTrials within the Labour Party in the UK and Europe.
SAGE: SAGE was founded as, and remains, an independent publisher committed to the goal of disseminating usable knowledge that lies at the heart of a healthy society. We publish a range of medical journals, many in association with some of the world’s most prestigious societies, and offer a broad spectrum of options, both open access and traditional, for rapid publication of clinical trials results, welcoming both ‘positive’ and ‘negative’ results. We strongly support the call for all clinical trials to be registered and for the full results to be reported in a timely fashion.
PhUSE: PhUSE is committed to transparency in clinical trial reporting. It is important that the results of all scientific research be made publicly available and disseminated as widely as is practical, in a timely fashion.
Radical Statistics: Radical Statistics is delighted to support the AllTrials movement to make clinical trial research open and scrutable to the public.
DXY: As the biggest online community for healthcare professionals in China, DXY is devoted to better communication and better quality within the healthcare industry. All clinical trials should be compulsorily registered, and all the individual data should be open for public scrutiny. DXY spares no effort to reveal the truth and propagate its importance and potential benefits to patients, physicians, researchers, and regulators in China.
MedSci: MedSci signs the petition and strongly endorses AllTrials’ call for all trials to be registered and reported. As the leading academic service provider in China, MedSci offer specific and professional ways that the call can be turned into action. We signed this because we believe that the more comprehensive the data the more effective the healthcare. Science should not be done in secret.
The Lupus Research Institute: The Lupus Research Institute and our New York affiliate, the SLE Lupus Foundation, are pleased to support the AllTrials petition for transparency in clinical trials. The LRI is the leading private funder of novel research in the autoimmune disease systemic lupus erythematosus and a strong advocate for patient participation in clinical trials. With a desperate need for new treatments for lupus and insufficient enrollment in clinical trials testing new drugs, access to trials results is extremely important for our community.
Birth Trauma Association: The Birth Trauma Association signed this because we strongly believe that good maternity practice should be based on good, strong evidence, no ideology or anecdote. Without transparency and openness, this is not possible.
National Collaborating Centre for Mental Health: The NCCMH, as guideline developers for NICE, are pleased to sign this petition and to support the AllTrials campaign. Access to all trial results will improve guideline recommendations and lead to better quality of care
UK Cystic Fibrosis Gene Therapy Consortium: The UK Cystic Fibrosis Gene Therapy Consortium supports this campaign whole heartedly. All clinical trials should be registered and results published. “Negative” outcomes have as much scientific value as “positive” outcomes and publication of all data is necessary to progress translational research as quickly and safely as possible.
Autism Rights Group Highland: We are signing because we believe that transparency and honesty are essential to progress and should be embedded within every stage of research to ensure that no trial is ever hidden, whatever the results.
Beating Bowel Cancer: Patients need as much information as possible when dealing with their disease. We believe that transparency and openness can only lead to better outcomes for patients.
Research Autism: As the only UK charity exclusively dedicated to research into interventions in autism we firmly believe that all clinical trial data should be made freely available. Publicly available trial results, whether positive or negative, will lead to better clinical decisions and better quality of care.
Throat Cancer Foundation: TCF support AllTrials because we believe that only by sharing and seeing all data can we truly feel the benefit of research. Withholding data and obscuring results can only ultimately slow down or halt progress and we are delighted to support AllTrials in their efforts to ensure transparency.
Balance: As a health institution and family planning center, we are shocked to learn that about half of all clinical trials have never been published. We absolutely agree with this petition, it is every patients’ right to know about the risk and benefits of any treatment he or she undergoes. We support your claim and hope that many more will.
Guild of Healthcare Pharmacists: GHP are supporting open, transparent and full disclosure of all clinical trial data as organisationally this promotes our objective to support innovation and advancement of pharmacy practice throughout the NHS to deliver safe and effective care for our patients. The alternative could only lead to inappropriate, unsafe and uninformed choices.
British Association for Counselling and Psychotherapy: BACP endorses this campaign as an organisation that is committed to evidence based practice. BACP believes it is essential for treatment choices to be based on all available evidence and not just that which has been published.
Dietitans for Canada: Dietitians of Canada is pleased to sign the AllTrials petition. Like other health professions, dietitians require unrestricted access to valid and unbiased evidence when making recommendations about patient care, policy or community programs.
The Irish Hospice Foundation: The Irish Hospice Foundation is committed to transparent research processes and supports both a register of trials and a mechanism to ensure all results, positive and negative, are reported. Individuals, organisations and decision-makers need access to this information. We strongly support the AllTrials initiative.
Canadian Agency for Drugs and Technologies in Health: CADTH is a strong supporter of the AllTrials campaign to have all clinical trials registered and all results reported. CADTH provides decision-makers with the evidence, analysis, advice, and recommendations they require to make informed decisions in health care. These decisions should be informed by a complete evidence base which would include the disclosure of all clinical data.
Peer J: PeerJ is very supportive of the AllTrials initiative. Full and transparent reporting of all conducted trials is essential to the progress of research in this field.
South East Wales Trials Unit:The purpose of clinical trials is to provide the evidence for clinicians and patients as to what works and for whom. A lack of transparency in any part of the pathway for the development of interventions threatens the value of the whole body of research and leads to unacceptable bias in the management options available to patients.
Research Design and Conduct Service: We aim to support NHS researchers to produce the evidence base required for their own work – there has to be a commitment in all those undertaking trials to make the publically available in both public and the private sector.
Heamatology and Clinical Trials Unit: The Haematology Clinical Trials Unit in Cardiff is proud to support the alltrials initiative. Having access to complete information is crucial to clinicians making properly informed judgements on treatments to offer patients, and repays the trust that trial participants have placed in us as trials organisations to ensure that their contribution to research is appropriately recognised and used for the benefit of people in the future.
British Thyroid Foundation: The British Thyroid Foundation is happy to sign up to this petition and believes it is in the interest of patients for all clinical trial data to be made available’
The Addison’s Disease Self-Help Group: ADSHG works to support people with adrenal failure and to promote better medical understanding of this rare condition. It aims to work with interested medical researchers in a collaborative, pragmatic and ethical manner. The ADSHG supports AllTrials for its enhancement of clinical ethics and scientific transparency.
Cardiff University: Cardiff University is pleased to support this campaign. We strongly believe in using all available evidence, from clinical trials, to change and develop medical practice, in the spirit and the traditions of Cardiff’s first and most Illustrious clinical trialist, Sir Archie Cochrane. Clinical Trials conducted by our researchers have resulted in a number of changes to medical practice, or, in some instances, have demonstrated a lack of benefit for a new experimental treatment. We will continue to insist that all trials conducted by our own clinical researchers and Clinical Trials Units are published, and we urge all others to do the same. Cochrane would have been horrified by the notion that information, generated from patients who consented to enter a clinical trial, was being withheld, and there can be no justification, ever, for doing so.
Society for Clinical Trials: Transparency of clinical trial study design and results is important to researchers, physicians and the public. 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.
Wales Cancer Trials Unit: All clinical trials should be registered and results published. All results of clinical trials have much scientific value and can shape the future of patient care. Publication of all data is necessary to progress research as quickly and safely as possible, thus producing reliable evidence to change practice, whilst minimising duplication of effort.
CONSORT: The CONSORT Group strongly supports the AllTrials campaign towards open, available data from clinical trials. The non-reporting, selective reporting and poor reporting of trials is a serious problem in medical research that can and has resulted in harm to patients. This is unacceptable and wasteful on many fronts and needs to be rectified immediately – patients deserve better.
PRISMA: The PRISMA Group is a strong supporter of the AllTrials campaign. Too often, systematic reviews are concluded with statements like “more research is needed” and “the quality of studies is too poor to make a valid assessment of effect”. Often this happens because data in primary studies are so poorly reported or entire studies are missing from the scientific record, that researchers can’t make sense of the information at hand. This problem must end and the AllTrials initiative is a fundamental part of the solution.
Figshare: figshare fully backs the AllTrials effort. The desired endpoint is completely aligned with figshare‘s ethos for open research data to make academia and medicine more efficient. The way in which clinical trial endpoints are recorded at the moment is completely unethical and has repeatedly proved detrimental to the medical community.
Hull York Medical School: Teaching in Evidence-Based Medicine is a core component of the undergraduate curriculum at HYMS – we want to ensure that future doctors know how to appriase and use evidence to inform their clinical decisions. But without access to ALL trial evidence, how can doctors be sure that those decisions are well-founded? HYMS supports the AllTrials campaign.
The Institute of Clinical Research: The ICR recognises the value of making the best possible use of information gathered in clinical trials and sees facilitating appropriate meta-analyses as an important part of conducting high-quality clinical research.
Belgian Health Care Knowledge Centre: As a producer of clinical guidelines and health technology assessments, the KCE crucially depends for its work on the free availability of all relevant trial information. In matters of health, or even life or death, lack of transparency is just unacceptable. We should no longer accept that this basic right is denied to patients.
Associazione Alessandro Liberati – Network Italiano Cochrane: The Associazione Alessandro Liberati – Network Italiano Cochrane strongly endorses the AllTrials initiative for all trials to be not just registered but also entirely published, to help patients, nurses, clinicians and policy makers make decisions based on all the best evidence. Openness is a value heavily defended by Alessandro Liberati, the founder of the Italian Cochrane Centre, and we are pleased to remember that openness contributes to strengthening the principles of democracy and respects for fundamental rights as laid down in Article 6 of the European Union treaty of Fundamental Rights of the EU.
Royal College of Physicians: The Council of the Royal College of Physicians (RCP) has agreed to support the principles of the ‘All trials registered, all trials reported’ campaign. This reflects the RCP’s commitment towards delivering greater transparency for the benefit of patient care. Greater clinical trials transparency will aid scientific progress and in turn benefit patient care. In signing up to the campaign, the RCP is keen to stress the urgency with which the community must determine how clinical trial transparency should be delivered. The full statement if available here.