Category Archives: Cancer Research

Elevating the Patient Voice: 3 things we learned from Cancer Experience Registry data

Since its launch in March 2013, the Cancer Support Community has asked people impacted by any type or stage of cancer to share the issues and concerns that defined their cancer journey with the Cancer Experience Registry. As of today, … Continue reading

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What exactly is a registry, anyway?

The Cancer Experience Registry serves a vital role in helping researchers better understand the cancer journey, but what exactly is the Cancer Experience Registry? Generally, a medical registry is a system for collecting, organizing and analyzing the experiences of individuals … Continue reading

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I’m not SHOUTING – I just want my voice to be heard

Guest blogger, Kay Johnson, CML survivor You’re used to making decisions. You multi-task while leading others in your job. Suddenly, you’re being told the decisions; you’re excruciatingly tired and weak; you can barely decide what to have for dinner. That … Continue reading

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The lung cancer community speaks out

During a public meeting at the Food and Drug Administration (FDA) last month, a lung cancer survivor shared her experience. When she was diagnosed years ago, the first thing her doctor said to her was, “How should we begin your … Continue reading

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Giving back by sharing your voice through the Cancer Experience Registry

If sharing your cancer journey could enhance the lives of others, would you help? I keep hearing that people who have been diagnosed with cancer want to give back.  They want to “pay it forward” so that the next person … Continue reading

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