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International HundredK+ Cohorts Consortium (IHCC)

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Our Mission

To create a global network for translational research that utilizes large cohorts to enhance the understanding of the biological and genetic basis of disease and improve clinical care and population health.

About IHCC

The International HundredK+ Cohorts Consortium (IHCC) aims to create a global platform for translational research – cohort to bedside and cohort to bench – informing the biological and genetic basis for disease and improving clinical care and population health.

We are bringing large cohorts together to encourage data sharing, improve efficiencies and maximize benefits in addressing scientific questions none could answer alone. We have formed three teams focused around data standards and interoperability, scientific strategy and cohort enhancements, and policy and bio-data sharing to address the value and challenges of combining large cohort data across borders.

Our member cohorts aim to recruit 100k participants or more, are disease-agnostic, have available biospecimens, and have longitudinal follow-up activities. We recognize, however, that cohorts from under-represented populations and low and middle-income countries (LMICs) may not fit some of these criteria, so exceptions are made to be inclusive as possible.

We are also continuously looking for novel cross-cohort scientific programs from our members. To gather ideas, we periodically open Requests for Ideas (RFIs). Many of the ideas from RFIs include rare conditions, exposures and genotypes as well as consanguinity, founder populations studies and other unique training opportunities that may potentially be addressed by bringing several large cohorts together.If your cohort is interested in joining IHCC, contact us for more information.

Learn More: The International Hundred Thousand Plus Cohort Consortium (IHCC): Integrating Large-Scale Cohorts to Address Global Scientific Challenges (White Paper – Sept. 2019)

History

IHCC was established in 2018 at the request of the leaders of the Heads of International Research Organizations (HIROs) through a collaboration between the Global Genomic Medicine Collaborative (G2MC) and the Global Alliance for Genomics and Health (GA4GH). It was formed after a successful International Cohorts Summit hosted by G2MC in March 2018 at Duke University in Durham, North Carolina.

The Summit enabled leaders of large-scale longitudinal cohorts worldwide to share best practices, discuss data sharing, explore standards, discuss common challenges, and explore the potential for large(r) collaborative sequencing and other ‘omic strategies. Several teams were created to pursue key issues within IHCC.

"The IHCC could significantly benefit individual cohorts by giving them a stronger voice and power. There is strength in numbers, and together, we can advance science."

Core COVID-19 Self-Report Downloads​

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Core COVID-19 Phone Survey Downloads​​

The PDF and Rich Text (Word doc compatible) documents, include the core survey questions, which should be customized for local administration.

The CSV file contains the REDCap data dictionary, containing all core questions and skip logic. It should also be customized for local administration.

Ancillary questions are not part of the core questionnaire, but can be used for additional data capture.

If using the questionnaire, please include the citation on the previous page. If you have any questions about the survey, please contact John Connolly.

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