clinical trials

A dazzle of zebras: Ehlers-Danlos Syndromes

A dazzle of zebras: Ehlers-Danlos Syndromes By Hannah Eccard On their website, The Ehlers-Danlos Society explains why people with Ehlers-Danlos Syndromes (EDS) call themselves zebras. “Medical students have been taught for decades that, ‘When you hear hoofbeats behind you, don’t expect to see a zebra.’ In other words, look for the more [...]

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration By Sara Ray What happened when we compared research strategies used to obtain patient insights? We discovered that using multiple strategies is key to gaining usable understandings. In a recent collaboration between Inspire and the FDA, we compared and contrasted [...]

Listen to People Impacted by Rare Disease

Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s [...]

Rethinking patient engagement in clinical trials: Be part of the solution

Rethinking patient engagement in clinical trials: Be part of the solution By Kathleen D. Hoffman, PhD Seated in the waiting room of a large medical center, I overheard the bright eyed, young man behind the reception desk ask a new patient, “Would you like to learn more about participating in our [...]

First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member

First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member By Kathleen Hoffman, PhD MSPH On June 4, 2015, Holly Kitchen, a young mom with metastatic breast cancer, published a video that received over 46 million views in one week. Its message? “Metastatic breast cancer has no cure.”1 Exactly three years [...]

Clinical Trials: 8 Reasons Researchers Should Pay Attention to Millennials

Clinical Trials: 8 Reasons Researchers Should Pay Attention to Millennials More than 25% of the US adult population are Millennials. At 83.1 million, a bigger cohort than Baby Boomers,1 Millennials are gaining leadership in their employment, having children (30% are parents)2 and becoming extremely influential both culturally and financially. Events that have [...]

Virtual Patient Engagement: Inspire and the NIH Clinical Center

Virtual Patient Engagement:  Inspire and the NIH Clinical Center Engagement with patients and caregivers is at the heart of Inspire’s community of cancer, chronic, and rare disease support groups.  While there are many ways Inspire can help the industry engage with a targeted patient population, virtual patient engagement  and authoritative expert content [...]

Introducing Inspire Recruit

Introducing Inspire Recruit Commonly discussed statistics on patient enrollment and retention in clinical research paint a bleak picture. Clinical trial on-time completion rates are low--only around 20%. This is due in part to the fact that 85% of clinical trials fail to retain enough patients.1 The causes may lie in the low [...]

Finding Patients With Rare Cancers Quickly

Finding Patients with Rare Cancers Quickly Almost one-third of all cancer deaths are caused by rare cancers but rare cancers represent only between 23.4% and 27% of all cancer cases.1 Between 25 and 30 million Americans and around 30 million people in the European Union live with rare diseases.2 Rare cancers are [...]

In new report, Inspire examines clinical trials, genetic testing

In new report, Inspire examines clinical trials, genetic testing Editor’s note: Last week, Inspire released, “Insights from Engaged Patients: An Analysis of the Third Annual Inspire Survey”. Over the past three years, the Inspire Annual Survey has captured insights of over 30,000 respondents, representing more than seven million data points. In the [...]