Linking cohorts, understanding biology, improving health

International HundredK+ Cohorts Consortium (IHCC)

Message from the IHCC Co-chairs

Greetings to the IHCC Community,

We welcome you to the inaugural edition of the IHCC Community Newsletter and we hope you are safe and have found some silver linings in last year’s events. Since our inception in March 2018, our efforts have been largely focused on building the governance and processes required to function effectively as a large, global community and launch our scientific, data and policy agendas.  We now enter a time in our early development where we look forward in order to build upon this foundation. This communication channel will serve as a means to keep you informed and aware of our progress and highlight opportunities to participate and contribute to our shared vision of improving global population health.

In 2020, we were all impacted by the unexpected disruptions caused by the global COVID pandemic. Starting with the necessity to pivot the 3rd International HundredK+ Cohorts Summit (ICS3, May 6,7 2020) from a planned in-person event to a virtual experience with an expanded audience, we demonstrated our ability to come together and prove our capabilities and value as a unique global community. Despite the disruptions and distractions of 2020, our membership and Working Teams showed great resiliency and delivered on the following accomplishments:

  • We established the overarching IHCC governance structure and ratified the Membership Agreement and 3 primary IHCC policies (Data Sharing, Publication, and Guidance for Partnering with Industry). We developed the working plan to operationalize the IHCC governance model.
  • We executed the first IHCC (pilot) project for Polygenic Risk Score evaluation to successfully demonstrate the merit of global cross-cohort research, followed by soliciting and awarding 7 additional scientific projects with broad scientific interest requiring LMIC participation as a criterion for funding.
  • We partnered with the Davos Alzheimer’s Consortium to support this disease specific program by leveraging the strength and providing access to the IHCC membership.
  • We launched the first Global Cohorts Data Atlas and harmonized metadata for 5 pilot cohorts, as well as expanded the data atlas for the Davos Alzheimer’s Consortium featuring a disease-specific user interface.
  • We have continued to build the IHCC Community by expanding the IHCC membership to 103 cohorts in 43 countries with > 50 million participants and Participated in the planning meeting for an African Population Cohort Consortium.

We were fortunate and grateful to receive awards in support of these accomplishments from our funders: the Chan Zuckerberg Initiative, Davos Alzheimer’s Collaborative, the National Institute of Health and the Wellcome Trust. We currently have Administrative Supplement and Competitive Renewal applications submitted to the NIH to expand the participation of cohorts with limited resources in the currently funded pilot projects and Atlas cohort database.

The 2020 Wellcome Trust Grant required the IHCC leadership to develop a 5-Year Strategic Plan. Launched in September 2020 and led by consultant Laura Runnels, a Strategic Planning Advisory Group was formed to guide the strategic planning process.  The process is designed to (1) solidify IHCC’s mission, vision, and values statements, (2) understand the strengths, weaknesses, opportunities, and threats that might accelerate or impede IHCC’s progress, and (3) develop goals and prioritize strategies for advancing the IHCC’s vision. Cohorts, industry partners and funders were involved in the data collection process via the November 2020 Strategic Planning Workshop and one-on-one interviews. The results will be compiled and shared with the membership in April 2021 in advance of implementation planning.

Lastly, we encourage you to join us for the 4th International Cohorts Summit of global leaders of large-scale longitudinal cohorts on Tuesday, May 25th through Thursday, May 27th, 2021 hosted by the International HundredK+ Cohorts Consortium (IHCC). This virtual event follows the May 2020 3rd International Cohorts Summit and will build upon the strategic planning initiative kicked-off at the IHCC Members Workshop in November 2020.

Our goals at this Summit are to galvanize the IHCC around a visionary, long-term strategic plan and path forward (developed from the results of the November 2020 IHCC Workshop, interviews with a cross-representative sample of IHCC members, industry partners and funders and guidance from the IHCC Strategic Planning Advisory Group) that sets our direction to:

  1. Continually build the cohorts community through promotion and partnerships with organizations (International Common Disease Alliance, Global Alliance for Genomics and Health, industry partners) with a specific IHCC commitment to limited resources settings/low- and middle-income countries (LRS/LMIC) representation on every committee and workgroup and address resource gaps that prohibit LRC/LMIC cohorts from fully engaging in the science.
  2. Expand the Cohorts Atlas to provide access to harmonized cohort-level metadata to enable federated data discovery and ultimately make available federated analysis interoperability for research and healthcare applications.
  3. Enhance the capabilities of all cohorts by leveraging the power of our membership to gain access to large scale genome sequencing, introducing access to developing digital health technologies, adoption of standardized phenotyping (e.g., PhenX) and harmonization and analysis of environment exposure data inclusive of climate change (Canadian Urban Environmental Health Research Consortium, National Institute of Environmental Health Sciences).
  4. Guide the IHCC Scientific Agenda to address population health targeted focus areas, such as infectious disease, cardiometabolic disease, mental/cognitive health, and global health crisis such as COVID-19 and environmental/genomic risks.
  5. Expand the consortium’s ability to identify and address key Policy issues which prohibit or restrict cross-organizational collaboration including data sharing, data access, health data privacy and issues prohibiting diversity, equity, and inclusion.
  6. Establish educational resources and infrastructure designed to develop capacity in cohort building and cross cohort data science aimed at strengthening the cohorts’ “workforce for tomorrow “through establishment of a novel IHCC cohorts’ educational platform and providing a forum for exchange of scientific ideas, best practices and lessons learned.

We invite any and all of you to help with the planning of the May virtual summit!

Our thanks go to all our cohort members, committee members, industry partners, funders and staff for the unselfish commitments and efforts made to date.  The accomplishments of our young community are evidence of more to come, and we look forward to sharing our success with you in 2021 and beyond.

Sincerely,

IHCC Co-chairs, 
Geoffrey Ginsburg
Peter Goodhand