- BY Susan Tucker
- POSTED IN Information
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- STANDARD POST TYPE
As someone living with celiac disease, you have a greater impact on scientific research and medical discovery than you may think. Treatments and cures? You have an enormous impact on those as well.
Patients usually see themselves on the receiving end of medical treatment. Doctors know how to diagnose and treat health problems, so by going to the doctor, patients get answers and get better. But how do doctors, researchers and drug developers know how to test, diagnose and treat patients in the first place?
Celiac Disease Research
Before any experiments or clinical trials happen, before any facts are written down in a journal article or a medical school textbook, patients help supply three essential pieces of information: What it’s like to live with a disease, what needs to change in order to live a full, healthy life and information on their health history.
Believe it or not, honest patient feedback about the good, the bad, and the ugly elements of living with a disease is a powerful tool in developing medical treatments. By understanding both the positive and negative experiences that patients have, researchers can better identify and address patient needs, even if it’s a need not specifically vocalized by the community. Allowing people to speak freely about their lives with celiac disease can help researchers see between the lines and find solutions to common issues. It’s the experiences of individual patients like you that add up to the fuller understanding that researchers and doctors need in order to effectively treat disease.
If you’re wondering why you haven’t heard your doctors tell you the importance of sharing your personal experience with disease before, that’s no surprise. In 2015, Beyond Celiac held a Research Summit that brought together celiac disease patients and caregivers with clinicians, scientists, the diagnostics and biopharmaceutical industries and a federal research agency. By talking directly with patients, we found that patient experiences were not accurately captured or addressed by current medical research. This meant that the needs most pressing to celiac disease patients were not being met—or, in some cases, even considered. Fortunately, we also found that it wasn’t just patients who wanted to change this; doctors, scientists and the pharmaceutical industry also wanted change that would ultimately improve patient outcomes.
Now, Beyond Celiac is addressing the need to bring patients and researchers together again in an ongoing way. In early 2017, we are launching an innovative technology that gathers data directly reported by patients which will be used to advance celiac disease research. We want to empower patients to become actively engaged in their own healthcare, as well as in the future healthcare of others diagnosed with celiac disease. Like our Summit, this research tool will be dynamic, and patients and researchers will work together towards solutions to the everyday challenges of living with celiac disease.
As part of this effort, Beyond Celiac will recruit patients who are already diagnosed with celiac disease by a physician to help test versions of the technology.
So what can you do as a patient who wants to be part of researching and treating celiac disease now? The first stop is signing up for our Research Opt-In to stay informed about this special initiative, patient research participation opportunities and current celiac disease research news.