Behcet’s disease patient, writer, and advocate

By Stephanie Wykstra, a freelance writer and research consultant for AllTrials USA. Joanne Zeis suspected she had Behcet’s disease long before she was officially diagnosed. She had researched the autoinflammatory disorder and her symptoms, and began visiting doctors,...

When research transparency is personal

By Stephanie Wykstra, a freelance writer and research consultant for AllTrials USA. Gregg Gonsalves was in his 20s when his partner approached him in tears, telling him the relationship had to end. Why? Gonsalves’ partner was diagnosed HIV-positive. It was the late...

My ovarian cancer journey

By Nancy Long I have worked in various areas of women’s health throughout my career as a registered nurse. I became a nurse practitioner in OB/GYN in 2000. I knew about and had cared for women who had been diagnosed with ovarian cancer. So how was it that I could have...

Patients first

From AnneMarie Ciccarella “I think it’s important for everyone to be mindful of the fact that we are the ultimate stakeholders in the clinical trial process. Whether we seek medication for curative purposes or to manage chronic conditions, our lives hang in the...

The incredibly complex case of missing medical research

Editor’s Note: Since the publication of this article, Ben Goldacre (AllTrials) and Anna Powell-Smith of the Evidence-Based Medicine Data Lab at the University of Oxford built a tool (Trials Tracker), which shows the universities, government bodies, and...
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