Preparing Patients for Precision Medicine

A uto i mmune and  a uto i nflammatory diseases with arthritis as a major clinical component (AiArthritis) are heterogeneous in nature, yet current clinical trials target roughly 40-60% of the population who are deemed typical of the general patient population. The truth is, we have talked to hundreds of patients living with these diseases who claim they would participate in trials, but they usually do not meet the inclusion criteria because their disease is not considered "text book". 


It is recommended by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) to treat AiArthritis diseases within the first six months from onset, as delay can result in unnecessary damage, disability and high costs to our healthcare system. We believe one key to achieving this is on the horizon - through precision medicine. 


After investigating the current landscape of precision medicine preparation, we realized both pharmaceutical manufacturers and regulatory agencies (Food and Drug Administration/FDA and European Drug Agency/EMA) are preparing for the shift in trial development.  But who is preparing the patients to enter these trials, which will require recruitment of a new population of participants, who unlike current enrollees, may not be representative of the general patient population?  Furthermore, who is educating patients about precision medicine, biomarkers, and its' potential to change the lives of those affected by AiArthritis diseases?

Our work is driven by conversation, problem-solving, and action!   Through peer-to-peer conversations, and the research conducted in our A Community Team (ACT) project, we have realized our community wants personalized treatments that will target their specific disease etiology so they can achieve a better quality of life faster and have a higher chance to achieve remission.  Not only is this scenario ideal for our population, but early and effective treatments would positively effect the long term healthcare market by significantly cutting costs on prescriptions, hospitalization and disability.



Solutions


Patient Education. Patients need access to precision medicine education, including its' current landscape, its' progression into testing medicines (clinical trials), and how they can advocate more for access to it.  Our organization, led by those living with Ai Arthritis diseases who also have professional experience as business leaders, educators, and research liaisons spent the last several years developing tools to help patients better understand precision medicine. 


Clinical Trial Shared-Decision Making Tool. We also know that as clinical trials for precision medicine emerge in immunology, a new group of patients will be able to participate in clinical trials. To prepare for this, in conjunction with helping patients now who may be interested in trial participation, we developed a clinical trial shared-decision making tool to help them decide and to help them bring up the conversation with their doctor.  View the tool.

Project Collaborators

Thank you to the Rheumatology Nurses Society and members for lending ideas for our Shared-Decision Making Clinical Trial Tool and dissemination of it into doctor offices.

Project Sponsors 


We thank the following nonprofit organizations and industry supporters for believing in the future of patient-research collaboration, drug development that meets the needs of a complex population, like autoimmunity, and research that can influence policy (“research advocacy”).   


UCB provided support for the Precision Medicine Trial portion and BMS provided the support for the patient education of Precision Medicine, which is a necessary step to make the trial project possible. Together we are stronger.

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