How Has COVID-19 Impacted Patients with Rare Conditions?

How Has COVID-19 Impacted Patients with Rare Conditions? By Judy Chandler Over 600,000 Inspire members are affected by rare conditions. As a vital partner to 40 rare disease non-profit advocacy organizations, Inspire’s rare disease patient and caregiver members represent over 3,000 rare conditions. Serving as a common point across these diverse conditions, Inspire was uniquely positioned to learn how rare disease communities were being affected by COVID-19.   First, we noticed a surge of COVID-19 posts across all of Inspire through the month of March. Inspire’s research team began by reviewing some of these member communications to identify [...]

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice By Kathleen Hoffman, PhD, MSPH The most persistent hurdle in running a clinical trial is recruiting and keeping participants. More recently, the FDA added the expectation that the value of released drugs be supported with Real World Evidence (RWE). A recently-conducted multi-center prospective observational study accomplished both by using patients as partners throughout clinical design. The PROP-UP study was a designed to collect real world patient centered data on the harms and benefits of the new, highly effective, direct-acting antiviral [...]

Real World Voice Allows Patients to be Part of the Cure

Real World Voice Allows Patients to be Part of the Cure By Claire Harter “The patient wants to be a partner in cure, just as with their doctors they want to be a partner in care.” - John Linnell, COPD Patient Advocate, talking about health literacy, eyeforpharma virtual conference, 4/14/2020 Where and how can patients partner with pharma for a cure? Where can pharma go to learn from patients about the patient experience? One resource is Electronic health records (EHRs). As a resource, they provide critical information about patient diagnosis and treatment. But, EHRs reflect the [...]