New tool will make it easier for patients with celiac disease and non-celiac gluten/wheat sensitivity to enroll in clinical trials, enabling patients to better engage with medical research and accelerate development of drugs and treatments.
Los Angeles, CA –Celiac Disease Foundation (CDF), the nation’s leading celiac disease patient advocacy organization, today announced the launch of the CDF Clinical Trial Finder, a new tool designed to help people with celiac disease and non-celiac gluten/wheat sensitivity [NCWS] participate in medical research clinical trials. Finding new treatments for celiac disease and NCWS is critical because as many as 50% of patients continue to experience symptoms and/or intestinal damage while on the gluten-free diet. In addition to actively advancing the search for treatments and a cure, patients who choose to participate in clinical trials may themselves get some relief from celiac disease and NCWS symptoms. Patients, loved ones, and their healthcare providers can access the new Clinical Trial Finder on the Celiac Disease Foundation website (celiac.org) or directly at trials.celiac.org.
Multiple clinical patient trials are essential steps in an extended, exhaustively documented and expensive process to determine the efficacy, safety and appropriate dosage of any treatment that is seeking the approval of the U.S. Food and Drug Administration. Medical researchers must populate clinical trials with the right quantity and mix of patients (including healthy “controls”), but many struggle to identify and recruit the individuals needed to their trials, most often because patients and their doctors are not aware of the relevant clinical patient trials available. Many existing clinical trial databases, including the main National Institutes of Health clinical trial database, are not user-friendly. The new CDF Clinical Trial Finder provides an easy-to-access, search, and explore, disease-specific interface to search for available trials by different variables, including region and disease symptom. The software at the heart of CDF’s Finder was originally designed for brain tumor patients by Michael Wenger, a volunteer web developer who successfully battled a brain tumor, and who graciously extended the technology to CDF.
“We know that clinical trials play a critical part in the advancement of therapies and cures for all diseases,” said Michael Wenger, creator of the CDF Clinical Trial Finder. “I hope that this platform can bring greater awareness of trials to the celiac disease community and that it will help accelerate much-needed and long-overdue medical breakthroughs.”
“We are deeply grateful to Michael Wenger for providing an easy-to-use tool that empowers our community and the healthcare professionals who serve them to advance the search for treatments and a cure by participating in research,” said Marilyn G. Geller, Celiac Disease Foundation’s Chief Executive Officer. “CDF is committed to ending the suffering caused by celiac disease and NCWS. The CDF Clinical Trial Finder sends a clear message to both patients and their families: Together we can help find treatments and a cure for celiac disease and NCWS.”
The CDF Clinical Trial Finder includes both interventional studies designed to test potential new drugs and observational studies to inform a better understanding of celiac disease and NCWS that may lead to treatments. All studies posted to the database have obtained appropriate regulatory approval.
The CDF Clinical Trial Finder is the latest element of CDF’s expansive initiative to advance patient-centered research and drug development. Educating and empowering patients to play an active role in the research and treatment process has proven to be the most efficient path to the development of effective treatments and cures for disease. Our patient-centered research initiative began in February 2016 with the launch of iCureCeliac®, the nation’s only public patient registry for celiac disease and non-celiac gluten/wheat sensitivity. To date more than 2,700 people have contributed their data to help researchers improve treatments and find a cure. The initiative expanded with the launch in May 2016 of CDF’s Patient Advocacy Program, made possible by a Patient Centered Outcomes Research Institute (PCORI) Engagement Award, which trains patients and caregivers to engage in all aspects of the research process, from identifying key research questions to dissemination and implementation of results. With more than 300 advocates now enrolled, CDF Patient Advocates are able to share their disease expertise and unique perspectives with researchers, leading to research design that is most beneficial to patients. The next phase in our initiative to empower patients to advance the search for treatments and a cure will be rolled out in the third quarter of 2017 as CDF begins active recruitment for promising clinical trials for celiac disease treatments.