Susan G. Komen(r) Launches A National Breast Cancer Research Registry

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Newswise — Susan G. Komen®, the world’s leading breast cancer organization has launched an innovative, cloud-based, research platform specifically for breast cancer patients and survivors to share their personal health data with Komen, where it will be used to accelerate breast cancer research and help discover the cures for breast cancer. The platform is part of a Komen-led initiative called ShareForCuresTM that will revolutionize the way health data are collected and used for groundbreaking research.

“ShareForCures is a solution for two pressing problems. The first issue being people affected by breast cancer cannot easily contribute to cutting-edge research and secondly, researchers do not have access to large amounts of diverse patient data,” said Paula Schneider, President and CEO of Susan G. Komen. “We will never get to true breast health equity if we do not include everyone in research. Now, with ShareForCures, we have a way for millions of people affected by breast cancer to share their health information and profoundly impact outcomes.”  

In the U.S., less than 10 percent of adult cancer patients enroll in clinical trials, and among them, fewer than 10 percent of enrollees are from historically marginalized or minoritized racial and ethnic groups.   

Breast cancer affects everyone differently, yet with such underrepresentation in clinical trials, we do not have a comprehensive understanding of how breast cancer impacts all people. Patients with the same tumor do not always respond the same way to the same therapies. Tumor biology combined with race, age, gender, genetics, lifestyle, lived experiences and other personal characteristics all play a role in breast cancer outcomes.   

Through ShareForCures, Komen will boost research participation by making it easy for individuals diagnosed with breast cancer to participate. Komen plans to engage all communities in this monumental effort to revolutionize representation in breast cancer clinical trials.

“Susan G. Komen is uniquely positioned to engage its community of supporters and we are thrilled to bring research opportunities directly to people who have been impacted by breast cancer,” said Victoria Wolodzko Smart, Senior Vice President of Mission at Susan G. Komen. “Our online format also helps to break down barriers created by time and distance, because not everyone lives near a research center or has time to travel. We’re here to support participants and appreciate that they are volunteering their own health information to make a lasting difference in research.”

Through ShareForCures, Komen aims to safely and securely connect health data provided directly by participants to researchers. Data won’t be siloed in research institutions, at specific providers or in specific medical record platforms. Rather it will be made available to research partners and academic scientists approved by Komen – leaning on our decades of experience funding research – to really drive breast cancer discoveries.   

“We know there are challenges within the research system that Komen alone cannot solve,” said Kim Sabelko, PhD., Vice President of Scientific Strategy and Programs. “What we have done is build a registry that is intentionally inclusive.  There are only three, simple eligibility criteria: being an adult, living in the U.S. and having a diagnosis of breast cancer.  We are going directly to potential participants and inviting them to be our partners in research. We are shaking up the system with ShareForCures, to give us the knowledge and real-world data from people reflecting the true breadth of lived experiences of those diagnosed with breast cancer that we need to reach the full potential of research to advanced personalized care and improve outcomes for everyone.” 

Participation is simple and joining ShareForCures is safe, secure, easy and makes a difference. Eligible individuals can join for free in three steps:  

  1. Create a user account
  2. Complete the informed consent and medical release forms
  3. Provide information about oneself and their breast cancer diagnosis

Komen will guide participants through the experience and keep them informed of research progress. Participants will provide information through surveys, medical records that may be collected, and some may be asked to provide a saliva sample to help researchers learn more about breast cancer. Data will be made available to research partners and academic scientists approved by Komen. Participants’ privacy will be protected, and Komen will not share a person’s name, contact information, or other personally identifiable information with researchers.

ShareForCures was made possible by financial support from AstraZeneca. To learn more, visit https://www.komen.org/ShareForCures

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