After being involved with data transparency for a few years, I continue to be pleasantly surprised by the continuous progress with respect to data transparency for clinical trials. At the Fifth Installment of the SAS Clinical Trial Data Transparency Forum, I was amazed by the amount of new information that speakers added to my existing knowledge of data transparency for clinical trials data.
Interesting new information included the human resources challenge, the growth of disease-specific repositories and the availability of an assessment on the research potential for increased access to the clinical trial data.
Resources, resources, resources
Speakers from sponsor companies clearly outlined the human resource challenge inherent in the gathering and de-identification of the clinical trial data. Some companies are changing processes for new trials to ease the future data transparency support challenge.
Allocating resources to support data transparency efforts was highlighted as a major issue in smaller firms. Possible approaches to solve the data transparency data preparation human resources challenge are:
- Creating dedicated transparency data preparation teams.
- Outsourcing the activity to a vendor.
- Using the existing clinical study teams.
Disease-specific data repositories
Prior to the conference, I was aware of the success of Project Data Sphere – an initiative of the CEO Roundtable on Cancer’s Life Sciences Consortium. Project Data Sphere aims to accelerate cancer research by allowing access to the comparator arms of historical cancer trial data sets.
During the conference, I learned of the availability of schizophrenia clinical trials data through the Open Translational Science in Schizophrenia (OPTICS). OPTICS fosters translational science in schizophrenia research by making clinical trial data plus observational studies and trials available through the NIH (via dbGaP) accessible to qualified investigators.
This is welcome news that new disease-specific repositories are being developed. The potential for disease-specific data repositories to advance science and impact human health in the future is immense.
Assessing the research potential - Wellcome Trust report
And speaking of the potential impact of increased data transparency for clinical trials data, a thought-provoking presentation from a representative of the Wellcome Trust discussed a report commissioned by their organization titled Assessing the research potential of access to clinical trial data.
The study is comprehensive and an excellent source of information for anyone interested to learn more about clinical trial data transparency and the potential benefits to medical research.
Want to learn more?
Increased access to clinical trial data for authorized researchers can be a valuable resource for a generation of new medical knowledge. The new insights will have the potential to improve public health over for decades to come.
No matter how closely you have followed data transparency issues, I suspect you will learn a great deal from the video recording of the Fifth Installment of the SAS Clinical Trial Data Transparency Forum. And you can learn more about the SAS data transparency solution.
Clinical trial data transparency is a rapidly evolving topic where sources of new information are a valuable resource. The Fifth Installment of the SAS Clinical Trial Data Transparency Forum did an excellent job of providing me with new knowledge.