Patients with rare diseases are facing unique challenges in finding appropriate clinical trials due to the scarcity of available studies and the limited awareness surrounding their condition. It is crucial to work closely with healthcare professionals, patient support groups and research organizations to explore all available options and make informed decisions about participating in a clinical trial.
We offer a range of pro bono services to help patients with rare diseases in their search for suitable clinical trials:
Communication with Rare Disease Organizations and Patient Support Groups.
These organizations often maintain databases or provide resources that list ongoing clinical trials for specific rare diseases. Connecting patients with these groups or organizations may help in guiding them to relevant clinical trials and providing support throughout the process.
Contacting Specialists, Academic Institutions, Research Organizations and Clinical Study Sponsors.
Syncro’s management team has been involved in clinical research for over 20 years and has developed connections with healthcare professionals, academic institutions, clinical trial sponsors and contract research organizations. We can reach out to our key contacts to identify ongoing or planned clinical studies in rare diseases. When a clinical trial is identified we can locate the nearest participating research center accepting to include patients, establish communication with study teams and manage patient logistics for clinical trial participation.
Identifying Rare Disease Registries: these databases collect and store information on individuals with specific rare diseases and can serve as a valuable resource for researchers looking to recruit patients for clinical trials.
Expanded Access Programs: in some cases, patients with rare diseases may be eligible for expanded access programs, also known as compassionate use or named patient programs. These programs allow access to experimental therapies outside of clinical trials for patients who meet certain criteria.
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