Members (in alphabetical order):
Kiarash Aramesh, Farshad Farzadfar, Roya Kelishadi, Reza Malekzadeh, Bita Mesgarpour, Afarin Rahimi-Movaghar, Nima Rezaei, Vandad Sharifi Senejani, Kazem Zendehdel
Consortial efforts are essentially international in scope, since they aim at building very large data sources and a multidisciplinary team, and a single-country consortium will limit the resources and expertise needed to accommodate such goals. However, there is still a considerable amount of underrepresentation for low-income regions in cohort cosortia. The map in figure 1 shows the geographical distribution of research groups affiliated with NCI consortia, and figure 2 shows the location of collaborating centers for another important consortium (International Childhood Cancer Cohort Consortium). These and many other evidences suggest that consortial activities are not present in all parts of the world. The most famous cohort consortium in our region is Asian Cohort Consortium (https://www.asiacohort.org/) which is mainly made up of cohort studies from Japan and Korea, and then China and Taiwan. Although Iran Cohort Consortium (ICC) aims at providing a medium for the different studies in the country to connect and interact, it is basically a limited effort without linking to larger multinational consortia, or involving international institutions. However, there are many issues that need to be discussed and defined for forming effective and fruitful collaborations. We tries to discuss these issues and questions, under the following five categories:
- Goals and policies: Why do we need international consortia in the first place? What are the advantages and disadvantages of forming international partnership for a consortium? Can we really have big science without international consortia? What are the different forms of collaborations (e.g. data sharing, biobanks, visiting scientists etc.)?
- Specific issues for Iranian scientists: What are the specific challenges facing Iranian scientists in forming or joining international collaborations? How do they cope with these challenges? How can ICC help resolve some of those issues?
- Ethical considerations: What are the national and global norms, regulations, and standards that govern data sharing among various studies/cohorts? What are the specific considerations regarding the specific types of research such as the ones include genomic data and biological samples? What are the ethical principles, standards, and norms governing establishing biobanks and collaboration among them? In the cases of incompatible differences among policies implemented by different collaborating national and international agencies/countries (and the way they are implemented and enforced), what are the ethical ways for reconciliation and problem-solving? Many collaborations now require data sharing to be explicitly included in the subjects’ consent froms in the participating studies, while many studies have started without having this item considered,. How should ICC face this challenge? What specific ethical considerations are important when new studies want to join international collaborations? Which IRBs are eligible and in charge of reviewing and oversighting these kinds of collaborations? The issue of intellectual property in international collaborative research.
- Funding and financial sources: Consortia are more successful in getting the funding they need: for example, in a study of NIH grants success rate, the percentage of funded (i.e. successful) grant applications was 48% for those submitted as part of a consortial activity, which was consistently higher than the success rates for ordinary grants (25-28%) since the year 2000. This may also reflect the fact that NIH funds primarily USA-based investigators. Why do the consortial efforts need funding? What are the international funding opportunities available to ICC? How can ICC improve its chances of being funded through international collaboration?
- Action plan: What steps should be taken to establish international collaborations? Who should responsible for promoting these activities? What infrastructures can ICC offer to facilitate international collaborations (e.g. data sharing website, organizing meetings, biobanking etc.)? Which cohort consortia/studies should we target?
Figure 1. Share of different countries in NCI Cohort Consortium.
Fig 2. Centers contributing to The International Childhood Cancer Cohort Consortium.