Over Two-Thirds of Inspire’s Membership Want Clinical Trial Information

Over Two-Thirds of Inspire’s Membership Want Clinical Trial Information By Richard Tsai Recently a member of a rare disease community on Inspire asked fellow members, “What should I know about clinical trials? Are they worth it? Any information would be helpful. Thank you.” Among the replies they received: “Unfortunately, we’ve not had many opportunities to participate in [rare disease] clinical trials. In my opinion, if a pharmaceutical company, medical device developer, etc. has gone through the required steps to get to human trials for [rare disease]--I’d absolutely want to help them by participating!” In another rare [...]

Find Your SMART: A blueprint for patient engagement

Find Your SMART: A blueprint for patient engagement The drug development process has historically siloed pharmaceutical companies and patients until the time comes for clinical trials. Drug development is a complex, expensive process that requires a lot of expertise. But patients are experts on their own experience of illness and their insights should be more integral to drug development. The pharmaceutical industry is already on the path towards integrating the patient experience early and often in the drug development process, partly because of the 21st Century Cures Act, which was made law in 2016 [my colleague Jeff [...]