Menaced by COVID-19, Susceptible Individuals Counter with Vaccine Acceptance By Kathleen Hoffman, PhD, MSPH “The sickest I've ever been!" wrote a participant in Inspire’s COVID-19 HealthJourney survey about surviving COVID-19. Another went into greater detail when asked to share their COVID-19 story. I’ve had systemic lupus (SLE) and Discoid Lupus for 25 [...]
COVID-19 vaccine and vulnerable populations: Over 26K participate in ongoing longitudinal study By Richard Tsai Crowd-sourcing info for a friend: have any of you who have lupus SLE and/or discoid taken the vaccine? Which one? What were your side effects? Thanks for sharing. — Brittney Cooper (@ProfessorCrunk) March 9, 2021 COVID-19 vaccines [...]
Where Do You Start When Searching for Exceptional Responders? By Richard Tsai Before 2012, if a cancer clinical trial had only one successful remission amid a field of failures, the drug under trial was thought to be unsuccessful. We weren’t asking a key question: What made it work for that one participant? [...]
Portraits of Resilience: How Patients and Caregivers Cope through the COVID Pandemic By Richard Tsai The word “storytelling” invokes a pleasant image of listeners around a campfire, listeners from any era and any culture. It could, however, just as accurately evoke an image of brain chemistry that creates direct experience and even [...]
How Clinical Trial Diversity Saved a Life By Kathleen Hoffman, PhD, MSPH “My pastor warned me not to participate in a clinical trial,” Karen Barrios said. Going against his advice, Ms. Barrios joined a clinical trial that she believes saved her life.1 Ms. Barrios shared her story as a panelist during the [...]
Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable By Dana Deighton In the fable of the Ugly Duckling, the duckling feels isolated by his differences until he discovers that he is a swan too. Patients with undiagnosed conditions also feel isolated, with some even describing not being believed by their [...]
Next Generation Online Health Communities: Data empowering patients and caregivers improves care and accelerates research By Richard Tsai The World Orphan Drug Congress USA 2020 (WODC 2020) provided four days of powerful panels and keynotes about collaborations, successes and failures in creating what rare disease patients and families need and desire most [...]
Accelerating Rare Disease Research By Richard Tsai COVID-19 has challenged the non-profit arena’s fundraising arm, which is largely based on face-to-face events like galas, runs and walk-a-thons. This limit on the number and amount of donations has occurred just as rare disease patient organizations have reached a tipping point in their influence [...]
COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials By Kathleen Hoffman, PhD, MSPH On a recent Pharma Talk Radio podcast called, The Impact of COVID-19 on Clinical Trials: Where are We? And Where are We Going?, three subject matter experts discussed how they see COVID-19 impacting the future [...]
