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 patient and caregiver generated online communication with the results of one of FDA’s Voice of the Patient meetings. The Data Sets Inspire’s membership includes over 350,000 patients and caregivers living and coping with rare diseases. In the last three years, there has been 203% growth [...]

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 research?” I smiled and thought, this is part of the solution. But it is a small part. I’ve been going to the same clinic for five years and today is the first time I’ve heard this question. I wondered if anyone would ask me - [...]

Brain Tumors-What patients and their caregivers need-An Inspire Insights: Engage Case Study

Brain Tumors - What patients and caregivers need - An Inspire Insights: Engage Case Study By Monica St. Claire Almost 80,000 adults will be diagnosed with brain or spinal cord tumors in the US this year.1 Seven hundred thousand are living with brain tumors in the US today.1 Although extensive media coverage of political figures, Joseph “Beau” Biden and Senator Edward “Ted” Kennedy, as well as Senator John McCain’s July 2017 diagnosis, has placed a spotlight on an extremely aggressive and rare brain cancer, glioblastoma, there are actually over 120 different types of brain or spinal cord [...]