What is No Lump Required?
If you follow our organization on social media (Facebook and Twitter) you may have seen references to a big research project we’ve been working on called CENA (Community Engaged Network for All). 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 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.

Our specific piece of this project called, NO LUMP REQUIRED, involves an on-line survey that allows patients to enter information about their IBC experience. The survey also 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 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!

Helpful tips for viewing before you start the survey process:

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

Link to No Lump Required:
http://www.ibcresearch.org/no-lump-required/?PEERREF=IBCRFweb
 

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.
https://www.youtube.com/watch?v=GPdqmMVKKl8