The CADENCE Registry

The CADENCE Registry
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To advance understanding of cold agglutinin disease (CAD) and better support patients globally, Sanofi Genzyme has launched a global registry. The CADENCE (Cold Agglutinin Disease Real World Evidence) Registry is the first major prospective data repository for CAD patients. Following is information about the registry and its potential benefits.

About CAD

CAD is a rare autoimmune disorder in which exposure to cold temperatures, those between 32 to 50 F (zero and 10 C), causes autoantibodies called cold agglutinins to bind tightly to red blood cells, inducing their disintegration (lysis) and resulting in anemia.

The disease commonly affects adults who are of middle age and older. It may manifest as a primary disease, in which the underlying cause is not known, or as a secondary disease likely due to bacterial, viral, or parasitic infections, certain types of cancer, or another autoimmune disease.

About the registry

Sanofi launched the CADENCE Registry in late 2019 to help improve patient care through advanced CAD knowledge.

The observational, non-interventional registry aims to enroll about 725 CAD patients at 121 sites. It will run through 2024. Countries initially participating include the U.S., Canada, France, the U.K., Germany, Italy, Spain, Austria, Norway, Japan, and Australia.

The study will follow patients for three years in the real world, collect their historical data, and track their disease-related characteristics and complications. Its data will serve as a resource for the global scientific and medical community.

Upon enrollment, and every six months thereafter, patients will complete outcome questionnaires relating to their functional health and well-being, generic health, and fatigue severity.

Other data collected will include associated comorbidities (presence of other ailments), treatment regimens, transfusion history, relevant biomarkers, disease characteristics, clinical outcomes, and safety information. The data will be collected and analyzed at regional and global levels. Sites will submit data via electronic case report forms.

Registry goals

The goal of CADENCE is to better understand patient and clinical characteristics, patterns and use of CAD treatments, long-term clinical outcomes, patients’ health-related quality of life, and healthcare resource utilization.

Another intent is to gain more insight into the natural history of CAD, including complications and coexisting conditions. The registry also will seek to help raise awareness about CAD and its treatment.

Registry eligibility

The registry will include patients 18 and older with primary and secondary CAD, and mixed warm and cold autoimmune hemolytic anemia.

For more information, write to [email protected]

 

Last updated: Jan. 7, 2021

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Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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