Transforming Fear into Hope: Prostate Cancer Treatment Discussions on Inspire By Kathleen Hoffman, PhD MSPH In October 2009, Us TOO Prostate Cancer partnered with Inspire to support men diagnosed with prostate cancer. Now, the Us TOO International Prostate Cancer Support Community on Inspire has over 23,000 members. Last year, almost 500 new [...]
Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020 By Jeff Terkowitz Lesley Gosden, a patient and patient advocate with Parkinson's disease, gave the patient keynote speech opening “Patients As Partners Europe,” held January 27-28.1 She described her experience in the GDNF study, which involved the surgical implantation of a port [...]
Getting the Most from Online Surveys By Kathleen Hoffman, PhD, MSPH Do you wonder about online surveys? Are they reliable? Is there bias? A recent article by the Pew Research Center For Weighting Online Opt-In Samples, What Matters Most? 1provides guidance to allay those concerns. Pew experimented with different procedures for [...]
Getting the Most from Clinical Trial Protocol Feasibility Studies By Monica St Claire Webinar provides expert tips for getting real feasibility data, optimizing trial design When the drug development process is at the point of moving to clinical trial, the next step is conducting a feasibility study. Stakeholders are all looking [...]
Do You Really Know How Patients Talk About Their Condition? By Kathleen Hoffman, PhD MSPH There are classic examples of advertising messages that ended up offending the target customer, but the Utah Department of Transportation provided the most recent. The Utah DOT’s lighthearted attempt to adopt a specific culture’s way of [...]
Do Patients Care About What Your Drug Does? By Sara Ray, MA Be sure the trial outcomes echo the patient voice, article says In most randomized pharmaceutical clinical trials, researchers are looking for a statistically significant performance difference between the two courses of therapy. But which is more important to the [...]
Clinical Trials and PROs: What Patients with Rare Diseases Say By Kathleen Hoffman, PhD MSPH Challenges to developing clinical trials for rare diseases begin with their rarity – each condition affects fewer than 200,000 Americans. Approximately seventy-five percent of those affected by rare diseases are children. It is estimated that 80 [...]
