Breast Cancer Asian Woman
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Susan G. Komen, renowned breast cancer nonprofit, has launched a research platform called ShareForCures for patients and survivors to securely share their personal health data with researchers. The cloud-based platform’s aim is to accelerate breast cancer research and help discover new cures and advance personalized treatment.

Less than 10 percent of adult cancer patients enroll in clinical trials in the U.S., and fewer than 10 percent of enrollees are from historically marginalized or minority racial and ethnic groups.   

“Susan G. Komen is uniquely positioned to engage its community of supporters,” 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.” 

People 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. But there is serious under-representation in clinical trials.

“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.”

Through ShareForCures, Komen aims to boost research participation securely and connect health data provided by participants to researchers. As a result, data won’t be siloed in specific research institutions, rather it will be made available to research partners and academic scientists approved by Komen—a group that is trusted by many.

“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.”

She added that, “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.”

Joining ShareForCures involves three steps: Create a user account, complete the informed consent and medical release forms, provide information about oneself and their breast cancer diagnosis.

Komen says it will guide participants through the experience and keep them informed of research progress. Participants will voluntarily provide information through surveys and possibly medical records. Some may be asked if they can provide a saliva sample. Data will be made available to research partners and academic scientists approved by Komen. Komen says it will not share a person’s name, contact information, or other personally identifiable information with researchers.

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