A new non profit allows cancer patients to share health data with researchers, who in turn put into data to share with the biomedical community to develop new drugs.
It's called Count Me In. It makes it possible for cancer patients anywhere in the US and Canada to engage with researchers and share their information as part of projects in specific cancer types
- Count Me In allows patients to share their medical history and experiences, and augment them with genetic analysis of tumor, blood, and saliva samples
- Count Me In shares de-identified data rapidly and freely with biomedical researchers everywhere
- Count Me In aims to engage more than 100,000 patients across many cancer types
- Four leading nonprofit organizations engaged in philanthropy, research and patient advocacy—Emerson Collective, Broad Institute of MIT and Harvard, Biden Cancer Initiative, and Dana-Farber Cancer Institute—will shepherd and steer the new organization
Find out more in the quick interview below.
About Count Me In
Count Me In is a 501(c)3 nonprofit organization on a mission to make every patient's experience count in the effort to understand and overcome cancer. Founded in 2018 by Emerson Collective and Broad Institute of MIT and Harvard, Count Me In engages and empowers patients to participate in cancer research by donating medical records, genomic data and tumor samples for study. To learn more, visit .JoinCountMeIn.org.
Count Me In began with discussions between Emerson Collective and Broad Institute in 2013 about new approaches for patient-partnered research, which led to projects launched with Dana-Farber Cancer Institute beginning in 2014 to test ideas and create the necessary infrastructure.
Since then, four projects have been launched and thousands of patients have chosen to donate their medical records, tumor samples and genomic information. More than 5,700 patients receiving care at more than 1,000 medical centers across all 50 US states and Canada have participated in Count Me Inprojects to date.
The current projects are:
- The Metastatic Breast Cancer Project (mbcproject.org), launched in October 2015;
- The Angiosarcoma Project (ascproject.org) launched in March 2017;
- The Metastatic Prostate Cancer Project (mpcproject.org) launched in January 2018; and,
- The Gastroesophageal Cancer Project (gecproject.org), which launched this month.
With this new model of patient-partnered research, Count Me In teams will make information widely available through public databases, such as the cBioPortal for Cancer Genomics and the National Cancer Institute's Genomic Data Commons. Each research project within Count Me In will collect and de-identify patient data, and combine them with data from genetic analysis of tumor, blood and saliva samples. These data will then be released at regular intervals to provide a continuously growing resource for analysis by researchers.
Over the next few years, Count Me In plans to launch additional projects in all major cancer types, as well as many rare cancers, including brain cancers, osteosarcoma, pancreatic cancer, lung cancer, colorectal cancer, urinary cancer, ovarian cancer and others.
As Count Me In launches new projects in the coming years, the organization also plans to launch a smartphone app in 2019, which will feature a simple sign-up process and will provide additional research project information for participants.
To learn more, visit .JoinCountMeIn.org.
Photo Credit: Count Me In