Community view: The case for expanding the ACGT family
Invited contributions from non-ACGT members of the wider research community
The case for expanding the ACGT family
Any large undertaking such as ACGT that aims to develop an infrastructure to support a wide range of target users, must constantly seek input from these users to ensure that it addresses true rather than imagined needs and that the solutions it puts together fit in well with current practices and deliver true value.
To date the guiding role of end user has been assumed by 2 partner organizations active in clinical trials and 2 biology research institutes, both groups representing the major target users of ACGT. Acquiring patient data and thoroughly testing standards and IT systems in use however is a demanding task that can only benefit from the involvement of as many end users as possible. With this in mind the European Organization for Research and Treatment of Cancer (EORTC) has been invited and will be actively joining ACGT in the next few months.
Created in 1962, EORTC is a not-for-profit international cancer research organization under Belgian Law. EORTC?s mission is to improve the standard of cancer treatment in Europe through the development of new drugs and to test more effective therapeutic strategies, using drugs which are already commercially available, surgery or radiotherapy. EORTC has the aim to facilitate the passage of experimental discoveries into state-of-the-art treatment by keeping to a minimum the time lapse between the discovery of new anti-cancer agents and the implementation of their therapeutic benefit for patients with cancer. EORTC research takes place in a network of over 300 participating institutions located in 32 countries. More than 2,000 clinicians are collaborating on a voluntary basis in 15 Disease/ Treatment Oriented Groups. In addition more than 5,000 cancer patients are entered into EORTC multidisciplinary trials each year. EORTC is the cooperative cancer clinical research group that detains the biggest publication record worldwide.
The activities of EORTC are peer reviewed by the US National Cancer Institute and the EORTC Drugs Master File is registered with the US Food and Drug Agency. EORTC Headquarters are a unique facility in Europe located in Brussels that provide scientific, legal, logistic and administrative support to EORTC clinical and translational research activities (protocol development, data management, statistical analysis, new drugs development, translational research, virtual biobanking, quality of life, regulatory and ethical affairs management, Pharmacovigilance and Quality Assurance). All EORTC protocols are written and conducted in accordance with international standards for ethics: the declaration of Helsinki, Good Clinical Practice guidelines approved by the International Conference on Harmonization.
EORTC is the sole European Institution with such a strong representation across patients? and clinicians?communities. Its role within ACGT will be to:
- Define potential new clinico-genomic scenarios to be fitted within the ACGT model.
- Practically assess the ACGT security architecture and evaluate the tools for data (pseudo) anonymization.
- Contribute to the ACGT model validation activities by providing practical examples from the EORTC clinical trials. Specifically, EORTC will provide a range of Case Report Forms from past trials executed by EORTC to be used for further developing the ACGT Master Ontology on Cancer and for validating its completeness.