In the quest to find a cure for malignant mesothelioma, one of the biggest obstacles that researchers encounter is the lack of patient sample information available to those outside of major cities and cancer research centers. One potential solution lies in the efforts of Nikhil Wagle, a medical oncologist out of Dana-Farber Cancer Institute and the Broad Institute. Wagle and his colleague Corrie Painter, a biochemist and expert in cancer immunology, have launched a non-profit organization called Count Me In that is working to use social media to let patients make their medical information and tissue, blood and saliva samples available to researchers in far-flung places.
Program encourages patient-partnered research
Though Count Me In has not yet extended to include malignant mesothelioma patients, it is easy to see how the organization’s efforts could benefit research into the rare and fatal form of cancer. When Wagle and his colleagues began, they were driven by the question, “How much more progress could we make if anyone could contribute their samples and their data for research?” They began with collecting data from patients diagnosed with metastatic breast cancer, and in 2018 partnered with the Emerson Collective and the Biden Cancer Initiative to expand their patient-partnered medicine project. The project works by inviting patients to click a “Count Me In” button on a website which then takes patients diagnosed with the specific disease through a short online survey and an informed consent process. They are then sent a kit through which they can submit salivated tissue samples and send them back for storage. Information that is obtained through these samples is put into the public domain for other researchers to use, and conclusions and discoveries that are reached from studies is communicated back to participating patients,
Mesothelioma patients may be able to participate in the future
Mesothelioma patients who have heard about the program are eager to have their condition included in the program, which currently includes the original metastatic breast cancer project and an angiosarcoma project. What the organizers of the program have found is that patients believe that they are making a real contribution. They feel empowered to be helping in whatever way they can, and encouraged by the sense that they are not alone in their fight.
If you are a patient diagnosed with mesothelioma, there are many ways that you can get involved in research, as well as many resources to help you through your treatment. For more information, contact the Patient Advocates at Mesothelioma.net at 1-800-692-8608.