Patients, their families, friends, physicians, colleagues, and communities are at the heart of the AllTrials campaign, which calls for all clinical trials (medical studies in which potential drug treatments are tested on people) to be registered, and their results reported. Some people have come to support the campaign because they are battling or have battled a disease; others sign on after working to help loved ones.
These are their stories.
Have a clinical trial story to tell?
*Please note that while this is a forum for patients to have their say, we strive for factual accuracy in our interview reporting.
Comments in response to the stories do not represent the ideas or views of the organization.
“The need for research transparency … is really ensuring that everyone has access to the best drug treatment possible with the most information about the risk and safety of those drugs,” says Josh Morrison, a living kidney donor and the co-founder of the living donation advocacy nonprofit, Waitlist Zero.
“I think transparency on all levels is crucial,” says Gina Szajnuk, a mother of three who co-founded the Rare and Undiagnosed Network (RUN) after she and her children began suffering from an undiagnosed condition.
A conversation with Paula Kozik of the National Ovarian Cancer Coalition. After being diagnosed with ovarian cancer, Kozik took a leap of faith and enrolled in a clinical trial to combat her disease.
“Public availability of clinical trial data is important, especially the clinical trial data used by the FDA to determine safety and efficacy of drugs,” says Lauren Stiles, the founder of Dysautonomia International which supports those suffering from conditions of the autonomic nervous system similar to her own.
“I think transparency in clinical trial reporting is absolutely necessary,” says Joanne Zeis, who after nearly two decades found out she was battling Behcet’s disease. “It doesn’t help anybody if the bulk of trials that are published are the positive results. You have to have everything out there to have a balanced report.”
“[Trial] results need to be verified and reproduced, and the entire knowledge base on a given medical product has to be shared widely in order to know the truth about the drugs people are taking,” says Gregg Gonsalves, who threw himself into HIV/AIDS research advocacy in his 20s.
AllTrials is an initiative of Ben Goldacre, BMJ, Centre for Evidence-based Medicine, Cochrane Collaboration, James Lind Initiative, PLOS and Sense About Science, and is being led in the U.S. by Sense About Science USA, Dartmouth’s Geisel School of Medicine and the Dartmouth Institute for Health Policy & Clinical Practice.