Why the Name “No Lump Required?”
The name comes from the fact that IBC often does not present with the typical type of breast lump that the public expects. One can have IBC without a lump! The Inflammatory Breast Cancer Research Foundation is part of a large patient-focused research project that is a part of PCORI (Patient-Centered Outcomes Research Institute) and PCORnet.
Genetic Alliance brought together a group of disease advocacy organizations 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.
Our specific piece of this project is an online survey, No Lump Required
, that allows patients to enter information about their IBC experience. In addition to questions about your IBC, the survey includes sections of “common data elements” such as gender, height, weight, etc. There are also questions about exercise, smoking, alcohol use, and other general health topics. These are included in all the surveys (a requirement of PCORI) for epidemiological purposes. As individuals register on the site they are asked to determine privacy settings. This means you choose who can see the information you enter. Once the settings are in place the actual survey begins.
Most published IBC patient data has typically come from the physician or researcher 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 will 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!
Check out these helpful tips before you start the survey
Creating Your Account [No Lump Required part 1] .pdf, 475K
Setting Up Your Primary Health Profile [No Lump Required part 2] .pdf, 935K
Taking the Survey [No Lump Required part 3] .pdf, 731K
When you are ready to take the survey:
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.