Patients as Partners
When you’re diagnosed with an illness such as metastatic breast cancer, pancreatic cancer, or another rare disease that has limited treatment options, it’s very easy to lose hope. You lose hope of a cure, hope for the researchers searching for one, hope for yourself, and hope for the people who will be diagnosed with your same illness in the future.
But what if instead of sitting idly by, you could help contribute to the research process? What if you could help find a cure?
Count Me In is giving patients that opportunity.
Count Me In
“There has never been a way for the 90-plus percent of patients in the U.S. who aren’t being treated at academic medical centers to be part of research.”
Count Me In is a nonprofit whose goal is to allow patients to have a bigger part in research, while simultaneously providing researchers more of the essential information they need to conduct their studies. Its simple for patients to join, and the impact has already been huge.
Some patients don’t realize just how much they have to offer the research community. Each person’s individual story and unique experiences with their illness are invaluable to researchers. Every patient story adds another piece to the puzzle. With enough added pieces, the bigger picture will hopefully become visible.
The issue is that even though a patient’s own doctors have their information and data, that information is hidden from the broader research community. If the group of researchers who are most fit to find the answers don’t have access to the puzzle pieces, there’s no way for them to make much progress.
All Count Me In requires is a saliva sample from patients and permission to contact their hospital to collect their blood/tumor samples.
Participant’s understand that their participation in Count Me In likely won’t result in a new treatment option for themselves personally. However, it may aid in the diagnosis, treatment, and overall experience for future patients, and that’s very empowering for participants to know.
“It’s not about me; it’s about the big picture. It’s about all of us.”
Count Me In’s Progress
Count Me In is currently working to establish 4 public databases- one for metastatic breast cancer, one for metastatic prostate cancer, one for angiosarcoma, and one for gastroesophageal cancer. All researchers will have access to these data sets.
It is the only database of its kind that includes patient reported data in addition to clinical, genomic, and molecular data.
Count Me In has already resulted in many promising discoveries. For instance, after uncovering that angiosarcoma contains a high number of mutations, researchers have found a potential new and more effective treatment for the cancer. It’s also helped to evaluate which types of treatments may be more effective for which types of patients.
There’s hope that Count Me In will help researchers uncover new genetic mutations (other than the ones we already know) which could make someone more at risk for developing certain types of cancers like metastatic breast cancer. It also has potential to show how existing treatments may aid in treating other diseases than the one they’re currently on the market for.
There are currently over 5,000 people enrolled in Count Me In. In the next few years, the hope is for that number to double.
The project is personal for co-chair of the project Reed Jobs. His father passed away from pancreatic cancer due to limited treatment options. That’s why the project is focusing first on the illnesses which have few effective treatment options like rare diseases and rare cancers.
Sharing information is such a simple thing, and it could potentially have life-altering effects on the rare disease community. After all, it’s hard to put a puzzle together when you don’t have all of the pieces.
In order for researchers to help us, we first have to help them.
You can read more about Count Me In and the progress the project has made so far here.