Clinical Trial Patient Assistance Program

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.

FCF’s Clinical Trial Patient Assistance Program is meant to address this issue. This program, available to FLC patients with financial need, will provide temporary accommodations near the trial site while a patient is enrolled in an FCF-supported clinical study. Currently, this program is available to patients participating in FCF-funded clinical trials at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore, Maryland. These studies 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 wants to ensure that 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:

  • Reside at least 75 miles from the Baltimore study site, and
  • Demonstrate financial need.

Program details:

  • Housing will be provided for patients only while they are being screened for enrollment in a qualifying trial or are actively enrolled in a qualifying trial.
  • Patients will be asked to share their clinical trial appointment schedule with FCF. Reservations for housing will be made for the days immediately surrounding those appointments on a space-available basis. Patients are expected to return home or make alternative housing arrangements whenever gaps of three or more days exist between required trial appointments. Patients are responsible for paying for accommodation nights that are not approved in advance by FCF.
  • Patients will housed at the Residence Inn Baltimore at The Johns Hopkins Medical Campus. Covered accommodations include studio rooms or 1 bedroom suites with a sofa bed.
  • FCF will pay the housing vendor directly for the room and tax. Parking, food, and other incidental expenses are the patient’s responsibility.
  • FCF will not reimburse for travel that has already taken place.

For additional information or, to obtain an application form for the program, please contact: