Genetic Alliance brought together a group of disease advocacy organizations who are all interested in increasing the involvement of patients in research. In fact, we want patients to drive the research!! Right now we’re one of only a couple of cancer focused organization in this diverse group but we all share a common goal….patient involvement in research.
Most published IBC patient data has focused on one institution and typically comes from the physician point of view. With NO LUMP REQUIRED we hope to capture the actual patient experience, not what someone else thinks you experienced. Once enough patients have entered their data we’ll begin talking with researchers to see what kinds of research might be possible.
Here’s your chance to be a part of IBC research from the comfort of your home. We’re excited about NO LUMP REQUIRED and hope you will be as well!
Tutorial: Creating Your Account [No Lump Required part 1] .pdf, 475K
Tutorial: Setting Up Your Primary Health Profile [No Lump Required part 2] .pdf, 935K
Tutorial: Taking the Survey [No Lump Required part 3] .pdf, 731K
For a more detailed description of CENA, organizations who participate, how the process works, privacy settings, and survey question types, visit this link to hear Genetic Alliance CEO, Sharon Terry, explain it.