research gaps Archives - Inspire Corporate

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire
Patient communities

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire

5 Steps to Creating a Vibrant Online Patient Community: Melanoma Research Alliance’s Melanoma>Exchange on Inspire By Judy Chandler, MPH, CHES Inspire launched a melanoma patient and caregiver support community in 2014, but was looking for a non-profit partner to contribute melanoma expertise and resources to community members. In 2017, the Melanoma Research Alliance (MRA) started expanding its efforts beyond research to also include patients and caregivers. That’s when the MRA and Inspire joined forces and launched the Melanoma > Exchange Support Community on Inspire. Inspire is a true partner for MRA in our work to better serve [...]

Jan 2021By Judy Chandler|0 Comments

Launching a New Drug During a Pandemic? Successful Launches Included a Rapid Pivot to Social Media
Patient insights, Marketing

Launching a New Drug During a Pandemic? Successful Launches Included a Rapid Pivot to Social Media

Launching a New Drug During a Pandemic? Successful Launches Included a Rapid Pivot to Social Media By Paul Nash How has the pandemic affected pharmaceutical product launches? Experts say that social media and research have been the key factors for this year’s successful launches. In a webcast on the PharmaVoice Webcast Network, “The State of Product Launch During and Post COVID-19,” speakers Maya Desai, Director at Guidehouse; Lead Launch COE, Eduardo Schur, Partner and life sciences global practice lead, Guidehouse; and Justin Zamirowski, Chief Commercial Officer, Better Therapeutics, described key results from their studies into recent pharmaceutical [...]

Oct 2020By Paul Nash|0 Comments

How Has COVID-19 Impacted Patients with Rare Conditions?
Patient insights, Patient communities

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 [...]

Oct 2020By Judy Chandler|0 Comments

Patients Are The Best Resource For Defining Study Endpoints
Patient insights, Patient communities

Patients Are The Best Resource For Defining Study Endpoints

Patients Are The Best Resource For Defining Study Endpoints By Robert Gardner In September, the World Orphan Drug Congress USA Fall Webinar series opened with a program called: “Understanding the Novel Challenges in Rare Disease Development: Perspectives From Experts.” They took an audience poll, asking attendees to identify their “biggest challenge in rare disease studies” from five choices, including competition for patients; lack of understanding of disease progression; development of appropriate endpoints; lack of data; and global regulatory pathways. Almost half the respondents -- 46% -- chose “development of appropriate endpoints” as the biggest challenge in rare [...]

Oct 2020By Robert Gardner|0 Comments

Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable
Patient insights, Patient communities

Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable

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 doctors or even their friends or families. One member with scleroderma shared her story: I spent 27 years seeking help --- every type of specialist, tests, hospitalizations, medications of every type, anything to put a name to my misery, not being treated like an attention-seeking patient. [...]

Sep 2020By Kathleen Hoffman, PhD, MSPH|0 Comments

Next Generation Online Health Communities
Patient insights, Patient communities

Next Generation Online Health Communities

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 – effective treatments for their conditions. In one failure turned to success, Kim Stephens shared her story involving inappropriate clinical trial endpoints. Stephen’s son has Hunter Syndrome, an extremely rare inherited condition where children lack an essential enzyme in their cells that eliminates waste . [...]

Sep 2020By Richard Tsai|0 Comments

Accelerating Rare Disease Research
Patient insights, Patient communities

Accelerating Rare Disease Research

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 on government and industry. According to Malcolm Gladwell, the “tipping point” is “the moment of critical mass, the threshold, the boiling point,” where “ideas...spread like viruses do.” 1In this case, the tipping point refers to the efforts made by rare disease patient organizations to provide [...]

Aug 2020By Richard Tsai|0 Comments