Partnering with Patients to Accelerate Cancer Research: Count Me In

Sara Balch, author

Sara Balch, BS, Project Manager, Count Me In and the Broad Institute of MIT and Harvard

Abstract: Count Me In is a research initiative whose aim is to engage patients living with all major cancer types, as well as those with rare cancers. Along with this goal, Count Me In hopes to bring about a cultural shift that empowers patients, researchers, and clinicians to work in partnership and accelerate medical progress by allowing  researchers to work directly with patients and advocacy groups along with software engineers and computational scientists, to collect, analyze, and share de-identified data. The combined power of thousands of individual experiences will assist researchers in understanding, why patients respond differently to treatments, uncover new genetic targets for therapies, and help propel groundbreaking discoveries that transform cancer care.

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Utilization of Cancer Registrars in Clinical Research

Rossio Y. Rodriquez, HIM, CTR 
Director, Data Management 
Proton Collaborative Group

What is a Cancer Registrar?

A cancer registry is the information system designed for the collection, management, and analysis of data on a person’s diagnosis that contains etiology, diagnosis, treatment of cancer, and patient’s status for as long as the patient is alive. The information in the registry is entered by a cancer registrar.

The men and women in this job role are very dedicated, detail oriented, and passionate about their oncology role.  They utilize many skills in their everyday tasks. However, one important skill that cancer registrars use the most is critical thinking. This is vital when reviewing a patient’s medical chart and putting together their cancer history into one abstract that is later used for cancer statistics. The role of the cancer registrar has a tendency to be overlooked as they are not in the frontline when it comes to the patient’s cancer care.   

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