Deciding to participate in a clinical trial to access a new innovative treatment is an important decision for patients and their families. In a rare disease like FLC, trials specifically designed for the disease are typically offered at very few locations. Consequently, patients enrolling in clinical studies may have to spend many days or weeks in a city far from their home. Despite the potential benefits of clinical trials, the costs associated with travel and lodging may deter many patients from participating.
The Fibrolamellar Cancer Foundation’s (FCF) new Clinical Trial Patient Assistance Program is meant to address this issue. This new program, available to FLC patients with financial need, will provide temporary housing at the trial site while a patient is enrolled in an FCF-supported clinical study. Initially, this program will be available to patients participating in FCF-funded clinical trials at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore, Maryland. Those studies currently include:
- DRP-104 (Glutamine Antagonist) in Combination with Durvalumab in Patients with Advanced Stage Fibrolamellar Carcinoma (NCT06027086) and
- DNAJB1-PRKACA Fusion Kinase Peptide Vaccine Combined with Nivolumab and Ipilimumab for Patients with Fibrolamellar Hepatocellular Carcinoma (NCT04248569).
FCF’s goal is to help ensure that all FLC patients who are interested in these important clinical studies can participate. Under the program, FCF will arrange and cover the cost of housing for patients and their caregivers for visits to Baltimore required for study enrollment.
Patients participating in the program must:
- Be enrolled in an FCF-funded trial at Johns Hopkins,
- Reside at least 75 miles from the Baltimore study site, and
- Demonstrate financial need.
Please note that FCF will pay the housing vendor directly for the room and tax: we cannot reimburse travel expenses or pay for travel that has already taken place. For additional information or, if you need such assistance, please contact:
- Lynn O’Malley at lomalley@fibrofoundation.org, or
- Megen McKinney at mmckinney@fibrofoundation.org.