Why does registering clinical trials and reporting their results matter?

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.

Peer-to-peer stories from researchers and physicians are in BLUE folders.

Stories from patients and patient advocates are in RED folders.

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.

From misdiagnosis to helping thousands

“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.

Behcet’s disease patient, writer, and advocate

“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.”

When research transparency is personal

“[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.

Patients first

“Withholding trial results because end points are not reached is a missed opportunity to advance the science,” says patient activist and blogger, AnneMarie Ciccarella.