The STARR Coalition is a nonprofit organization working to bring together thought-leaders within clinical research, pharma and advocacy. By creating a neutral playing field, leaders throughout the industry and advocacy are able to find solutions to complex issues hindering the progress of cutting-edge research, especially in the area of central nervous system disorders. Diversity in research was one of the first topics brought forth by the stakeholders.
A growing movement is building around “patient-centered” clinical research. Patient-centered clinical research broadens the conversation to not only include sponsors and CRO’s, but involving the volunteer into every aspect of the trial design. Volunteers become informed collaborators whose investment into a trial goes beyond mere participation into a team member working towards the overall success of the trial. This type of process requires the design to incorporate many aspects of the volunteer; ethnicity, race, socioeconomic status, gender, exceptionalities, language, religion, sexual orientation, age, geographical area, just to name a few. By embracing diversity in the trial framework, we open participation to individuals from a broad cross-section of our society, ultimately benefiting outcomes.
Clinical research is rooted in the communities they serve. Effective community outreach, community education and enrollment of research volunteers’ hinges on the engagement of diverse communities. The STARR Coalition members have identified cultural dynamics as a top priority. You may self-identify as from a specific race, but within this population, cultural identity will vary greatly based on a wide range of factors; customs, language, family dynamics, peer bias, geographical roots, religious practices and many other subtilties. We are working with stakeholders from across the industry and advocacy to create a framework to plug into any community to create trust in clinical research.
Unfortunately, many medical indications are plagued by stigma. Central nervous system disorders such as mental illness offers unique challenges. It takes an average of 10 years after first symptoms appear for someone to seek treatment for mental illness. Stigma may be an undercurrent of cultural bias. Recognizing diversity is vital to furthering research and treatment and is the key to finding cures for diseases.
The STARR Coalition is made up of people like you. We rely on our stakeholders like Evolution Research Group and others to drive progressive conversations. To learn more visit www.thestarr.org.