The Registry Network
Understanding the research landscape to identify gaps and address specific needs is essential to ensure that limited research funds are targeted most appropriately, and, in the case of health research, to ultimately benefit health worldwide.
Established in 2006, the ICTRP is now housed within the Research for Health department of the WHO Science Division. The platform’s mission is to ensure that a complete view of clinical trials is accessible to all those involved in healthcare decision-making.
This will improve research transparency and will ultimately strengthen the validity and value of the scientific evidence base. It also allows patients to identify relevant clinical trials and researchers to access an overview of previous and current research.
With a global perspective, a key role of the ICTRP is to enhance transparency and reduce the knowledge gap of clinical trials conducted in low- and middle-income countries. To achieve this, ICTRP aims for an increase in the number of countries with either their own national clinical trial registry (meeting WHO standards) or an enforceable policy that clinical trials be registered in a Primary Registry in the WHO Registry Network.
The ICTRP Registry Network started in 2006 with three registries: ISRCTN from the UK, ANZCTR from Australia and New Zealand, and ClinicalTrials.gov from the USA. The Network now has 18 mostly national or regional registries and is continuously growing. The Network follows a set of published standards defined and agreed upon by the Network.
The ISRCTN registry has been a pillar of the ICTRP Network and has been registering trials since the year 2000. It currently has about 19,500 clinical trials and provides updated clinical trial records to the ICTRP on a weekly basis.
The ICTRP Search Portal aims to provide a single point of access to information about ongoing and completed clinical trials worldwide. It provides a searchable database containing the trial registration datasets made available by registries around the world meeting the WHO’s criteria for content and quality control.
The ICTRP Search Portal has been developed to make it easier for users to search for clinical trials. The database is updated on a weekly basis and contains more than 600,000 records of clinical trials.
During the last few years, ICTRP has initiated several collaboration projects with stakeholders in and outside the WHO to make sure that the data collected from the clinical trial registries can be disseminated in different ways and according to tailored needs:
- The WHO e-Library of Evidence for Nutrition Actions (eLENA) is an online library of evidence-informed guidelines for an expanding list of nutrition interventions. It is a single point of reference for the latest nutrition guidelines, recommendations and related information such as clinical trials.
- The Swiss National Portal of clinical trials (KOFAM) is the Swiss Federal Office of Public Health’s (FOPH) portal for human research in Switzerland. This website includes extensive basic information on the regulation of human research in Switzerland, and various tools for researchers and clinical trials recruiting in Switzerland, Germany and Austria.
- The Human Genome Editing (HGE) Registry is a central database that collects information on clinical trials using human genome editing technologies. The HGE Registry uses data collected by the WHO ICTRP.
- The Orphanet Rare Diseases Platform is a unique resource providing manually curated and expert-validated knowledge on rare diseases and the Orphanet nomenclature of rare diseases, and is based at INSERM (the French National Institute for Health and Medical Research).
As soon as the COVID-19 outbreak started the response from WHO was swift, especially in the research area. A dedicated website was created to track the new coronavirus, with a link to the COVID-19 trials on ICTRP. The ICTRP registries started registering COVID-19 trials in late January 2020 and the number has increased at a rapid pace.
In April 2020, WHO launched the SOLIDARITY trial, which has been registered on the ISRCTN registry here. ISRCTN has so far registered 29 trials related to COVID-19. The ICTRP Registry Network will continue to register all types of clinical trials and will give a special focus to the registration of the results of those trials as well.
ICTRP will continue operating under the difficult circumstances imposed by the COVID-19 pandemic and is planning to create an improved version of the search portal that will sustain the continuous increase in demand for clinical trial information.
To find out more about what the ICTRP Network’s registries are doing to make information on clinical research accessible during the pandemic, take a look at this blog written by the ISRCTN Database Manager.