The Coalition to Transform Clinical Trial Engagement Launches National 'Champions for Change – PTO Initiative' to Expand Access to Clinical Trials for Working Patients with 7 Corporate and Non-Profit Members
Launched in 2024 and led by the Foundation for Sarcoidosis Research (FSR), CTCTE is now a 36-member collaborative of patients, clinicians, medical societies, patient advocacy organizations, and industry, committed to increasing engagement in clinical trials by reducing key barriers reported by patients with chronic conditions. The Champions for Change – PTO Initiative emerged from this coalition as part of its national strategic plan to address workplace-related obstacles. This initiative builds off FSR's and the CTCTE's efforts which resulted in a requested letter from the Department of Labor (DOL) providing clarity that employees who enroll in clinical trials and family caregivers supporting those enrolled in clinical trials, are protected under the Family Medical Leave Act (FMLA). By working with Human Resources departments, FSR and the CTCTE are encouraging companies across America to provide at least one paid day off for clinical trial participation as a benefit for their employees.
'By giving employees paid time off to participate in clinical trials, companies have the power to promote clinical trial access and participation for employees, accelerate medical breakthroughs, and save lives for current and future generations. This is more than a benefit---it's a bold and necessary commitment to humanity and a powerful way for corporate America to lead with united purpose,' said Mary McGowan, President and CEO of the Foundation for Sarcoidosis Research. 'We know that getting clarity of FMLA protections for clinical trial participants and their support system, is an important step to making clinical trial participation an option for all patients who wish to participate. This initiative allows us to expand that conversation from the doctor's office to corporate America.'
Clinical trials drive medical innovation and often offer patients access to better treatment options. Yet those who could benefit most are frequently left out due to systemic barriers that make participation too costly. According to FSR's IRB-approved survey of Black patients with sarcoidosis, limited paid time off, inflexible work schedules, and income loss from missed work were cited as barriers to joining or completing a clinical trial. Other regional and national studies have come to the same conclusion about job-related barriers contributing to lower enrollment and retention – especially among underserved communities. These burdens lead to exclusion from trials, which not only harms the communities most impacted by chronic conditions but also jeopardizes the clinical trials enterprise by failing to include patients from all backgrounds—limiting what we learn about potential treatments.1 2
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1 National Academies of Sciences, Engineering, and Medicine. (2022). Improving representation in clinical trials and research: Building research equity for women and underrepresented groups. The National Academies Press.2 Craig, L. S., Sarpong, D. F., Peacock, E. M., & Theall, K. P. (2023). Clinical trial participation among underserved communities: Insights from the Louisiana Community Engagement Alliance. The American Journal of the Medical Sciences, 366(6), 324–332.
'As the President and CEO of a mid-size health-focused non-profit, I am acutely aware that the health of my employees is essential to the success of our organization. By providing my employees with time off for clinical trial participation, I not only signal to my employees that I care about them and their health and wellbeing, but it also starts the conversation at the workplace about the power of clinical trial participation to advance the development of better therapies and outcomes for all impacted by chronic diseases,' said McGowan.
The initiative was first introduced in May of 2023 by FSR at a Congressional Briefing in response to barriers identified in FSR's 60-page white paper as part of a comprehensive roadmap to expand engagement of underrepresented communities in clinical trials. Last year, on clinical trials day, Mallinckrodt Pharmaceuticals became the first company to officially sign on to 'Champions for Change', leading the way for other companies to do the same. Today, the initiative goes public with seven national partners committed to championing change for clinical trials in the workplace.
We're proud to recognize the founding members of the : American Thoracic Society, Diverse Research Now, Foundation for Sarcoidosis Research, Mallinckrodt Pharmaceuticals, Mural Health, Recursion, and Sabai Global. Each of these employers has committed to providing at least one day of paid time off for employees participating in clinical trials— demonstrating their leadership in expanding access and driving innovation in medical research.For more information about the Champions for Change – PTO Initiative and how to join the Coalition to Transform Clinical Trial Engagement, visit ignorenomore.org.
The work of CTCTE is sponsored by Mallinckrodt Pharmaceuticals and supported by a Scientific Advancement Grant from Boehringer Ingelheim.
About the Foundation for Sarcoidosis Research (FSR):
The Foundation for Sarcoidosis Research is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $7.2 million in sarcoidosis-specific research efforts.
Media Contact:Cathi DavisEmail: cathi@stopsarcoidosis.orgPhone: 312-341-0500
A photo accompanying this announcement is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/c95e8490-e76d-4f4a-a51d-8d1ddc31af7a
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