The arena of public disclosure and access to individual patient level data from clinical trials continues to generate a lot of discussion. Given the upcoming March for Science this topic seems more relevant than ever. I highlighted some updates on the state of the field in my recent paper: “Data Access and Sharing: Are we being transparent about clinical research? Let’s do what’s right for patients” published in the Annals of Oncology April 5.
https://academic.oup.com/annonc/article-abstract/doi/10.1093/annonc/mdx123/3102943/Data-Access-and-Sharing-Are-we-being-transparent?redirectedFrom=fulltext

In addition, I had the pleasure of being invited by the editor of the New England Journal of Medicine to attend a two-day symposium on the topic the same week. There, data science experts and patients discussed the imperatives for sharing as well as some of the logistical and strategic issues involved in the effort. The drive for transparency in society is alive and well and the need in medical research is all the more important given the stakes for the patients who risked their lives in the trials and for all patients whose lives depend on the results of our research efforts. I will be giving numerous invited lectures on the topic all over the country this year and will keep you posted on new developments.

Frank

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CategoryNews Coverage
  1. May 20, 2017

    Transparency in clinical trial data is quite relevant. Analysis of multiple studies using big data analytical tools can and does reveal, sometimes, important trends that may not be apparent from limited studies. For example, data from multiple studies, found in the NEJM and elsewhere, show that the combination of radiation with hormone therapy is more effective for the treatment of recurrent prostate cancer than radiation alone, a common treatment modality or that the combination of prostate “seeding” (brachytherapy) with external-beam radiation (EBR) is more effective than just EBR. This kind of information is crucial for men trying to grapple with treatment decisions that face them with high-risk cancer diagnoses.

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