Developing Infrastructure For International Collaborative Research In Coagulation Disorders: Coagulation Disorders Research Consortium (CDRC) and Coagulation Disorders Data and Specimen Repository (Biorepository)
Authors: Enockson Candace , Wu Yiyong , Hakobyan Narine , Simpson Mindy L. , Valentino, MD Leonard A. 
Published: October 2019

Research in coagulation disorders is limited by the small population of those affected; the broad, worldwide demographic; and varying access to and availability of care. Hence, there is need to collaborate internationally to achieve research goals for the coagulation disorder community. Here we present the creation of a novel international consortium and biorepository to address this need.

The CDRC was established as an international consortium of researchers interested in studying blood coagulation disorders and in advancing knowledge in this area by fostering collaborative research studies focusing on, but not limited to, the diagnosis, evaluation, and treatment of hematological disorders such as hemophilia and thrombosis/thrombophilia.

The lack of availability of high quality bio-specimens is often limiting for researchers; the specimen and data repository was therefore created to support such collaborative research. The biorepository will contain tissue samples including: blood [serum from clotted blood and plasma in EDTA, citrate, or citrate + corn trypsin inhibitor]; DNA [from the buffy coat of blood in EDTA]; and procedural/surgical tissue samples [synovial fluid and joint tissue]; as well as relevant medical information collected from consenting healthy (free of known diseases) subjects and from subjects with bleeding or clotting disorders to be archived for use in future studies. A web-based database has been developed to collect and warehouse the deidentified information regarding study subjects participating in the biorepository. Members of the consortium will have the option to submit data and specimens to the biorepository to benefit the research efforts of other members and/or to use the data and specimens from the biorepository to support their own research for studies approved by the member’s IRB or similar regulatory group and the Rush IRB.

A primary benefit of participating in this consortium is the opportunity for collaboration with other investigators internationally on key questions that affect patients with bleeding and clotting disorders and access to samples from different racial and ethnic groups for comparative studies. Members are encouraged to develop collaborative studies and grant proposals, particularly in the area of translational research, which will foster the development of improved diagnostic modalities and more effective treatment options for those with coagulation disorders. Data regarding member participation in the consortium and review of sample acquisition will be presented.

Disclosures:

Valentino: Baxter BioScience: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding; Bayer HealthCare: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding; CSL Behring: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding; GTC Biotherapeutics: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding; Inspiration Bioscience: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding; NovoNordisk: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding; Pfizer: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding.