rare disease

Social Listening to Understand the Unmet Needs of Patients

Social Listening to Understand the Unmet Needs of Patients By Marina Shayevich and Sara Ray Across healthcare, patients lament the imperfection of pharmaceutical treatment. Although grateful to have life saving and life improving medications, patients are often met with frustration at the limitations of their medications. Nowhere is that more evident than [...]

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 [...]

How You Can Achieve Patient Focused Drug Development

How You Can Achieve Patient Focused Drug Development By Monica St Claire The application of a sociolinguistic lens can glean hidden meanings within seemingly ordinary communications. On the Society of Linguists website, Walt Wolfram, director of the North Carolina Language and Life Project at North Carolina State University said, “We use [...]

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 [...]

How R&D Teams Can Use Patient-Centricity for Clinical Trial Optimization

How R&D Teams Can Use Patient Centricity for Clinical Trial Optimization By Monica St. Claire In 2014, Tufts Center for the Study of Drug Development performed a comprehensive assessment of the use of social media and digital technology in clinical research. This forward-thinking study revealed that pharmaceutical, biotechnology companies and contract [...]

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community For patients and caregivers facing rare cancers, finding others going through the same experience is challenging.  Yet, communicating with others who have “been there” is essential support. This can be especially true when statistics and online [...]

The Case for Online Consumer Recruiting

The Case for Online Consumer Recruiting Over the past few years, recruiting for consumer healthcare market research has undergone a drastic change. In the past, pharma clients would take their business questions to their research vendors, who could easily leverage panel companies to fill the desired project samples and ultimately deliver successful [...]

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 [...]

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis In patients who have pulmonary fibrosis, the moist, elastic lung tissue starts to thicken and scar making it increasingly difficult for blood to get oxygenated. As scarring builds up over time in this progressive disease, the amount of oxygen getting to the brain [...]

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis “Imagine being in a crowd and wishing you were invisible, but you’re marked, and there is nowhere you can hide.” Shanene Higgins wrote that in her essay “Marked: My scars remind me of my purpose,” part of Inspire’s 2017 Experts by Experience eBook. [...]