Brooke lives with her husband Marcus and their two young children in a rural community. Between her work as a real estate agent, her children, and her position on her local development association’s board, Brooke leads a busy, active life.
Brooke has also been living with a rare disease for the past three years. Much of that time was spent seeing different doctors and being subjected to many different tests before she was accurately diagnosed. There is no cure for her illness, a fact that Brooke and her family eventually came to terms with after some difficulty. And while there are several treatments available to address some of her signs and symptoms, none of those therapies were developed specifically for her disease.
Frustrated at the lack of treatment approaches and worried about her continued disease progression, Brooke speaks to her doctor who recommends she look for a clinical trial.
Finding a trial
Brooke begins searching for a clinical trial using the resources available to her. Listen to learn more about her motivation and her initial experience.
Explore the ecosystem
Let’s explore the various channels and stakeholders that Brooke referenced in her search for a clinical trial, and her assessment of each one. Tap the cards below to learn more.
Study Website
Web resource published by trial sponsor
Contains up to date information on trial and eligibility. Not always available as an option.
Patient advocacy group
Organization that provides education and support resources
Is patient- and caregiver-oriented but may not be fully aware of every clinical study or be able to address questions.
EudraCT Clinicaltrials.gov public website
Government-run registries of clinical trials (EU and US)
Lots of good information but difficult to find what you are looking for if you do not know what to search for.
Social media campaigns
Newer platform to inform patients about trials
Uses channels relevant to patients but not all patients are on social media or have access to these services.
Personal physician or care team referral
Referral from HCPs who have treated a patient
Personal physician will recommend trials when other treatment options have been considered but not every treating physician is aware of all planned or ongoing studies.
Personal network
Other patients and their families
Trusted relationships. Information from a non-healthcare provider could be less scientifically rigorous, but helpful in understanding a patient's lived experience.
Principal Investigator to Patient letter
Engaging handouts available at specialized treatment locations
Letters raising awareness of and recruiting for clinical trials. Materials may not be in plain language for patients.
Ecosystem challenges
Discuss which channels and stakeholders are likely to be most meaningful and influential to Brooke. Prioritize the channels and stakeholders from most compelling (top) to least compelling (bottom) using the cards to the right.
Click and drag the cards to rank the channels and stakeholders.