How can data transparency improve medical research? By releasing data from a recent Alzheimer’s trial, the National Institute on Aging (NIA) has ensured that the trial can contribute to further scientific research, even though the trial itself did not prove the efficacy of the chosen treatment.

New BITSS Program Manager Jo Weech discusses the NIA’s decision to release the clinical trial data from its pivotal A4 Alzheimer’s Study and how that reflects its commitment to the principles of open science.

Open access to clinical trial data provides benefits beyond the original study. In medical research, making data publicly available can lead to advances in treatments and understanding of the human condition. The NIA, which is one of the 27 institutes and centers of the National Institutes of Health (NIH), is advancing open science principles through its data transparency. Recently, the NIA made the trial data and biosamples from the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4) study publicly available for researchers. 

The A4 study was groundbreaking in its focus on preclinical Alzheimer’s and its early commitment to open data. The A4 study tested whether the investigated drug would slow cognitive decline in the early stages of the disease, the first study of its kind in individuals with preclinical Alzheimer’s. While the experimental treatment study did not meet its endpoints — meaning it did not demonstrate effectiveness in slowing cognitive decline — it did set a new precedent in research transparency. 

The study team regularly shared data and biosamples from nearly 1,200 participants and continues to release data. According to the NIA’s blog post, the study has generated insights into Alzheimer’s biomarkers, gender differences, and the disease’s biology across populations. More than 60 peer-reviewed publications have been generated from the data shared thus far, and the full trial data set could lead to further progress in Alzheimer’s research.

The posting of the clinical trial data aligns with the growing recognition of the importance of transparency in research, especially research with the potential for a large societal impact. Initiatives like the A4 study set a powerful precedent for leveraging open data to accelerate research progress in medical science and other fields.

The NIA shared more about the study and landmark data released at the 2024 NIH Alzheimer’s Research Summit. A recording of the event is available here.