IFPMA Clinical Trials Portal discontinued, visitors being re-directed to the WHO International Clinical Trials Registry Platform
The International Federation of Pharmaceutical Manufacturers and Associations (IFPMA) and its member companies maintain a longstanding commitment to transparency and support to clinical trials data sharing.
In 2005, to mirror our commitment, the IFPMA launched the first ever international web portal (called the IFPMA Clinical Trials Portal) to provide healthcare professionals, patients, and their families with an easy-to-use, single point of access to a comprehensive array of online information about ongoing and completed clinical trials of medicines and vaccines our companies develop. trials of drugs and vaccines our companies develop.
In recent years, the number of national, regional, or global searchable registries has expanded dramatically. Today, the IFPMA Clinical Trials Portal is only one of many portals available on the internet that allowaccess to aggregated clinical trials databases provided through individual governments, academic institutions, and corporate sponsors. In this context, the IFPMA Clinical Trials Portal only duplicates other existing tools and most importantly, no longer captures the significant amount of clinical trials data now made available. As a consequence, its usage has dropped considerably.
Given these developments, IFPMA has taken the decision to discontinue the IFPMA Clinical Trials Portal.
To ensure that the IFPMA Clinical Trials Portal visitors and registered users continue to have access to quality, comprehensive, and publicly-accessible clinical trials information, IFPMA will direct queries to the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP).
With the mandate to "establish a voluntary platform to link clinical trials registers in order to ensure a single point of access and the unambiguous identification of trials with a view to enhancing access to information by patients, families, patient groups and others", the WHO ICTRP facilitates the registration of all clinical trials provided, among others, by the pharmaceutical industry, using the WHO Trial Registration Data Set.
The IFPMA Clinical Trials Portal was set up as a web crawler and designed to aggregate data from three existing registries, i.e. clinicaltrials.gov, Japan Pharmaceutical Information Center , Current Controlled Trials, and IFPMA member companies’ corporate websites. All of this information is captured by the WHO ICTRP sources. Thus, by closing the IFPMA Clinical Trials Portal, no clinical data will be lost and current users will benefit from access to more comprehensive clinical trials information.
While the IFPMA Clinical Trials Portal was an important resource when it was created nearly 10 years ago, today IFPMA is confident that healthcare professionals, patients, and their families who need international clinical trial information will be best served by the WHO ICTRP.
The IFPMA reaffirms its pledge to provide access to information and will revise its principles in line with upcoming relevant changes in the regulatory environment regarding clinical trials data disclosure.
If you may have any query, please send it to communications(at)ifpma.org
Joint Position on the Disclosure of Clinical Trial Information via Clinical Trial Registries and Databases
In 2005, the pharmaceutical innovative industry committed, through the endorsement of a Joint Position, to the registration of ongoing clinical trials it sponsored, as well as the outcome of completed clinical trials, on publicly accessible, internet-based registries.
This position highlighted industry’s commitment by providing details such as:
- Clinical trials concerned
- Timeframe for posting
- Acceptable clinical trials registries
- Minimum clinical trials registration data set.
As updated in 2009, the Joint industry clinical trials transparency position extended the range of clinical trials that member companies should provide information on to include all clinical trials in patients, as a minimum.
The scope of this Joint Position now includes provisions such as :
- early stage safety trials of medicines for life-threatening conditions, which are typically not done in healthy volunteers,
- posting of registry details of all new trials in patients on a publicly accessible website within 21 days of the start of patient enrolment, followed by the
- posting of summary results of any trial covered by this joint position within one year of the medicinal product concerned being first approved and made commercially available in any country.
Joint Position on the Publication of Clinical Trial Results in the Scientific Literature
Recognizing the important role of scientific literature and to expand its transparency policy on clinical trials, the innovative pharmaceutical industry committed in 2010 to principles on the publication of clinical trials data, irrespective of any trial's outcome, in peer-reviewed publications.
Completing the 2005 principles, this new Joint Position details elements on:
- Concerned scientific literature
- Content of the information submitted for publication
- Timeframe for publication
- Uniform requirements for manuscripts to be followed
- Disclosure principles of author’s and sponsor’s interest(s)
Recognizing the important public health benefit for patients and healthcare professionals to access clinical trial information, the pharmaceutical industry agreed in 2005 to develop general principles and guidance on what should be the information disclosed and how to publish such data as laid down in endorsed joint positions.
These Joint Positions set forth the views and commitment of the innovative pharmaceutical industry, as represented by the European Federation of Pharmaceutical Industries and Associations (EFPIA), the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA), the Japanese Pharmaceutical Manufacturers Association (JPMA) and the Pharmaceutical Research and Manufacturers of America (PhRMA).