Health research priority setting processes assist researchers and policymakers in effectively targeting research that has the greatest potential public health benefit. Many different approaches to health research prioritization exist, but there is no agreement on what might constitute best practice. Moreover, because of the many different contexts for which priorities can be set, attempting to produce one best practice is in fact not appropriate, as the optimal approach varies per exercise. Therefore, following a literature review and an analysis of health research priority setting exercises that were organized or coordinated by the World Health Organization since 2005, we propose a checklist for health research priority setting that allows for informed choices on different approaches and outlines nine common themes of good practice. It is intended to provide generic assistance for planning health research prioritization processes. The checklist explains what needs to be clarified in order to establish the context for which priorities are set; it reviews available approaches to health research priority setting; it offers discussions on stakeholder participation and information gathering; it sets out options for use of criteria and different methods for deciding upon priorities; and it emphasizes the importance of well-planned implementation, evaluation and transparency.
ObjectivesTo analyse developments (and their causes) in the number and proportion of clinical trials that were registered in different parts of the world after the International Committee of Medical Journal Editors (ICMJE) announced in 2004 that it would require registration of clinical trials as a condition for publication.SettingThe International Clinical Trials Registry Platform (ICTRP).DesignThe ICTRP database was searched for all clinical trials that were registered up to 31 December 2013.ResultsThe ICTRP database contained data on 186 523 interventional clinical trials. The annual number of registered clinical trials increased from 3294 in 2004 to 23 384 in 2013. Relative to the number of clinical trial research publications, the global number of registered clinical trials increased fivefold between 2004 and 2013, rising particularly strongly between 2004 and 2005. In certain regions, especially Asia, the annual number of registered trials increased more gradually and continued to increase up to 2013. In India and Japan, two countries with marked but more gradual increases, these increases only happened after several local measures were implemented that encouraged and enforced registration. In most regions, there was a trend toward trials being registered at local registries.ConclusionsClinical trial registration has greatly improved transparency in clinical trial research. However, these improvements have not taken place equally in all parts of the world. Achieving compliance with registration requires a coalescence of global and local measures, and remains a key challenge in many countries. Poor quality of registered trial data and the inaccessibility of trial protocols, results and participant-level data further undermine the potential benefits of clinical trial registration. National and regional registries and the ICTRP have played a leading role in achieving the successes of trial registration to date and should be supported in addressing these challenges in the future.
BackgroundLack of transparency in clinical trial conduct, publication bias and selective reporting bias are still important problems in medical research. Through clinical trials registration, it should be possible to take steps towards resolving some of these problems. However, previous evaluations of registered records of clinical trials have shown that registered information is often incomplete and non-meaningful. If these studies are accurate, this negates the possible benefits of registration of clinical trials.Methods and FindingsA 5% sample of records of clinical trials that were registered between 17 June 2008 and 17 June 2009 was taken from the International Clinical Trials Registry Platform (ICTRP) database and assessed for the presence of contact information, the presence of intervention specifics in drug trials and the quality of primary and secondary outcome reporting. 731 records were included. More than half of the records were registered after recruitment of the first participant. The name of a contact person was available in 94.4% of records from non-industry funded trials and 53.7% of records from industry funded trials. Either an email address or a phone number was present in 76.5% of non-industry funded trial records and in 56.5% of industry funded trial records. Although a drug name or company serial number was almost always provided, other drug intervention specifics were often omitted from registration. Of 3643 reported outcomes, 34.9% were specific measures with a meaningful time frame.ConclusionsClinical trials registration has the potential to contribute substantially to improving clinical trial transparency and reducing publication bias and selective reporting. These potential benefits are currently undermined by deficiencies in the provision of information in key areas of registered records.
BackgroundLittle is known about who the main public and philanthropic funders of health research are globally, what they fund and how they decide what gets funded. This study aims to identify the 10 largest public and philanthropic health research funding organizations in the world, to report on what they fund, and on how they distribute their funds.MethodsThe world’s key health research funding organizations were identified through a search strategy aimed at identifying different types of funding organizations. Organizations were ranked by their reported total annual health research expenditures. For the 10 largest funding organizations, data were collected on (1) funding amounts allocated towards 20 health areas, and (2) schemes employed for distributing funding (intramural/extramural, project/‘people’/organizational and targeted/untargeted funding). Data collection consisted of a review of reports and websites and interviews with representatives of funding organizations. Data collection was challenging; data were often not reported or reported using different classification systems.ResultsOverall, 55 key health research funding organizations were identified. The 10 largest funding organizations together funded research for $37.1 billion, constituting 40% of all public and philanthropic health research spending globally. The largest funder was the United States National Institutes of Health ($26.1 billion), followed by the European Commission ($3.7 billion), and the United Kingdom Medical Research Council ($1.3 billion). The largest philanthropic funder was the Wellcome Trust ($909.1 million), the largest funder of health research through official development assistance was USAID ($186.4 million), and the largest multilateral funder was the World Health Organization ($135.0 million). Funding distribution mechanisms and funding patterns varied substantially between the 10 largest funders.ConclusionsThere is a need for increased transparency about who the main funders of health research are globally, what they fund and how they decide on what gets funded, and for improving the evidence base for various funding models. Data on organizations’ funding patterns and funding distribution mechanisms are often not available, and when they are, they are reported using different classification systems. To start increasing transparency in health research funding, we have established www.healthresearchfunders.org that lists health research funding organizations worldwide and their health research expenditures.Electronic supplementary materialThe online version of this article (doi:10.1186/s12961-015-0074-z) contains supplementary material, which is available to authorized users.
IntroductionThe benefits of clinical trials registration include improved transparency on clinical trials for healthcare workers and patients, increased accountability of trialists, the potential to address publication bias and selective reporting, and possibilities for research collaboration and prioritization. However, poor quality of information in registered records of trials has been found to undermine these benefits in the past. Trialists' increasing experience with trial registration and recent developments in registration systems may have positively affected data quality. This study was conducted to investigate whether the quality of registration has improved.MethodsWe repeated a study from 2009, using the same methods and the same research team. A random sample of 400 records of clinical trials that were registered between 01/01/2012 and 01/01/2013 was taken from the International Clinical Trials Registry Platform (ICTRP) and assessed for the quality of information on 1) contact details, 2) interventions and 3) primary outcomes. Results were compared to the equivalent assessments from our previous study.ResultsThere was a small and not statistically significant increase from 81.0% to 85.5% in the percentage of records that provided a name of a contact person. There was a significant increase from 68.7% to 74.9% in the number of records that provided either an email address or a telephone number. There was a significant increase from 44.2% to 51.9% in the number of intervention arms that were complete in registering intervention specifics. There was a significant increase from 38.2% to 57.6% in the number of primary outcomes that were specific measures with a meaningful timeframe. Approximately half of all trials continued to be retrospectively registered.DiscussionThere have been small but significant improvements in the quality of registration since 2009. Important problems with quality remain and continue to constitute an impediment to the meaningful utilization of registered trial information.
What humans haptically perceive as parallel is often far from physically parallel. These deviations from parallelity are highly significant and very systematic. There exists accumulating evidence, both psychophysical and neurophysiological, that what is haptically parallel is decided in a frame of reference intermediate to an allocentric and an egocentric one. The central question here concerns the nature of the egocentric frame of reference. In the literature, various kinds of egocentric reference frames are mentioned for haptic spatial tasks, such as hand-centered, arm-centered, and body-centered frames of reference. Thus far, it has not been possible to distinguish between body-centered, arm-centered, and hand-centered reference frames in our experiments, as hand and arm orientation always covaried with distance from the body-midline. In the current set of experiments the influence of body-centered and hand-centered reference frames could be dissociated. Subjects were asked to make a test bar haptically parallel to a reference bar in five different conditions, in which their hands were oriented straight ahead, rotated to the left, rotated to the right, rotated outward or rotated inward. If the reference frame is body-centered, the deviations should be independent of condition. If, on the other hand, the reference frame is hand-centered, the deviations should vary with condition. The results show that deviation size varies strongly with condition, exactly in the way predicted by the influence of a hand-centered egocentric frame of reference. Interestingly, this implies that subjects do not sufficiently take into account the orientation of their hands.
One of the most pressing global health problems is that there is a mismatch between the health research and development (R&D) that is needed and that which is undertaken. The dependence of health R&D on market incentives in the for-profit private sector and the lack of coordination by public and philanthropic funders on global R&D priorities have resulted in a global health R&D landscape that neglects certain products and populations and is characterised, more generally, by a distribution that is not ‘needs-driven’. This article provides an overview of the mismatch, its causes, and solutions.
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