Human Genome Editing (HGE) Registry
The Human Genome Editing (HGE) Registry is a central database that collects information of clinical trials using human genome editing technologies. The HGE Registry is using the data collected by the WHO International Clinical Trials Registry Platform (ICTRP). The ICTRP gathers the trial registration data sets provided by Primary Registries.
In accordance with the principles of transparency and inclusivity, the HGE Registry aims at making information about clinical trials using genome editing technologies easily accessible to all interested stakeholders.
Access the HGE Registry
Please click on this link: Clinical trials using genome editing technologies*
*Disclaimer: Trials posted on this search portal are not endorsed by WHO but are provided as a service to our users. In no event shall the World Health Organization be liable for any damages arising from the use of the information linked to in this section. None of the information obtained through the use of the search portal should in any way be used in clinical care without consulting a physician or licensed health professional. WHO is not responsible for the accuracy, completeness and/or use made of the content displayed for any trial record.
Background information
At its first meeting (18-19 March 2019), the WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (the Committee) agreed “on the need to provide a more structured mechanism for collecting and curating details of planned and ongoing research”. The Committee requested WHO to start work on developing a registry. In accordance with the principles of transparency and inclusivity, the Human Genome Editing (HGE) Registry aims at making information publicly accessible to all interested stakeholders. Failure to register any work that falls within the scope of the HGE Registry “must be considered as a fundamental violation of the principle of responsible stewardship of science.”
At its second meeting (26-28 August 2019), the Committee agreed to support a first phase of a new global registry to track research on human genome editing. The first phase is a pilot phase and it will include somatic and germline clinical trials. In order to ensure that the HGE Registry is fit for purpose and transparent, the Committee will engage with a broad range of stakeholders on how it will operate.
In a first phase, the HGE Registry will cover both somatic and germline clinical trials. The creation of the HGE registry that covers any proposed clinical trials involving genome editing tools on human embryos and germline cells does not mean that WHO advocates and endorses such activities. In a statement issued on 26 July 2019, the WHO Director General agreed with the WHO Expert Advisory Committee’s recommendation that it would be irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing.
In a second phase, the HGE Registry will also cover research using genome editing technologies on (i) human embryos and on (ii) germline cells or their progenitors when gametes derived from these will be used to create embryos, even when there is no attempt to initiate/establish a pregnancy.
