ECRIN's 2018 celebration of ICTD took place in Budapest, Hungary on 15 May 2018. The theme of the event was ‘Clinical Trials and Innovation'. The aim was to engage with the public, scientific community and decision makers on issues related to (multinational) clinical trials in Europe, and to address issues related to clinical trials and innovation in particular.
ICTD 2018 was organised by ECRIN in collaboration with its Hungarian national scientific partner, the Hungarian European Clinical Infrastructure Network (HECRIN).
The event brought together investigators, patient representatives, national authorities, health technology assessment specialists and other stakeholders involved in multinational clinical studies from across Europe and Hungary.
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ECRIN's 2017 celebration of ICTD took place in Lisbon, Portugal on 19 May 2017. The theme was ‘Data sharing and reuse: attitudes and practices in multinational clinical research’. The aim was to engage participants in discussion on issues related to data sharing and re-use in particular.
ICTD 2017 was organised by ECRIN in collaboration with its Portuguese national scientific partner, the Portuguese Clinical Research Infrastructure Network (PtCRIN), and the Portuguese National Authority of Medicines and Health Products, I.P. (Infarmed).
The event will brought together investigators, patient representatives, national authorities, health technology assessment specialists and other stakeholders involved in multinational clinical studies from across Europe and Portugal.
The ICTD meeting was followed by a complementary meeting organised by PtCRIN in collaboration with partners. The theme was 'Support to Clinical Trials: Funding, Infrastructures and Investigator Perspectives'.
In celebration of ICTD, ECRIN held a meeting on 'Clinical trials in the era of personalised medicine' on 20 May 2016 in Prague, Czech Republic. The aim was to increase awareness of ECRIN and its Czech national scientific partner – Czech Clinical Research Infrastructure Network (CZECRIN) – among Czech policymakers and the scientific community, as well as to address issues related to personalised medicine and multinational clinical trials.
Held under the auspices of Milan Štěch, the President of the Senate of the Parliament of the Czech Republic, the event was organised by ECRIN and CZECRIN in cooperation with the Czech Committee on Health and Social Policy.
Interviews were conducted with various speakers. To view them, check out the Videos page
Transparency was the theme of ICTD 2015, held in Trondheim, Norway on May 21st, 2015. Click on the links below to see videos of presentations from diverse stakeholders.
- Rita Banzi from the Mario Negri Institute for Pharmacological Research, reviews the Institute of Medicine's 2015 report on transparency
- Kristjan Erlendsson, associate professor of medical education, associate dean of education, University of Iceland Medical Faculty, discusses how to improve regulation and transparency in Nordic clinical research
- Silvio Garattini from the Mario Negri Institute, head of the ECRIN Scientific Board, on ECRIN's experiences with transparency
- Trish Groves, deputy editor, BMJ, and editor in chief, BMJ Open, explains the story and the success of the AllTrials initiative and gives the perspective of scientific journals
- Toby Lasseron, senior editor, Cochrane, presents Cochrane's view on present and future transparency in clinical research
- Andy Powrie-Smith, director – team leader, European Federation of Pharmaceutical Industries and Associations, presents the views of the pharmaceutical industry on transparency
- Gabriela Soskuty, vice president government affairs at B. Braun Melsungen AG, talks about transparency of clinical evidence in medical devices
Transparency in clinical research involves registration of clinical trials on publicly available databases (e.g., www.clinicaltrials.gov), accessibility of patient data for subsequent analysis, and publication of results irrespective of the trial outcome. In addition, for full transparency patient-level data should be accessible, enabling reanalysis, secondary analysis, group analysis and patient-level meta analysis.
Having transparent results aims to ensure that decisions related to the safety and efficacy of vaccines, drugs and medical devices for use by populations are supported by the best-available scientific evidence. Evidence-based public health decisions and strategies ensure, in turn, an optimal allocation of public health resources and, ideally, better patient outcomes.
While medical professionals and policymakers need the results of clinical trials to make decisions about which treatment is best, not all registered trials publish their findings. It is estimated that the results of half of all completed clinical trials have never been published, and trials with positive results are twice as likely to be published.
How ECRIN Supports Transparency
ECRIN requires the following transparency criteria for the trials it supports:
- Commitment to register the trial in a public register before inclusion of the first participant
- Commitment to publish results irrespective of findings
- Commitment to make raw anonymised data sets available to the scientific community upon request to the sponsor or principal investigator one year after the trial is completed (last follow- up of the last patient) or, for registration trials, when registration is completed or the development is discontinued