Collage of headshots of academics arranged in colorful hexagons around a central photo of a woman, neuroscientist Winnie Orchard, PhD, the lead of the STANDARD project, in a blue dress speaking on stage. The image highlights collaboration and leadership.
Neuroscientist Winnie Orchard, PhD, leads the interdisciplinary collaboration between experts in women’s brain health, reproductive psychiatry, AI, and UX/UI to develop the STANDARD.

Building The Gold STANDARD for Women’s Brain Health

Good science is contingent on good data, and the quality of that data often starts with asking the right questions. 

For women’s brain health, a field that has been understudied for decades, foundational questions are quite literally just beginning to be asked. Rather than be discouraged by this deficit, researchers at the Ann S. Bowers Women’s Brain Health Initiative – an effort supported in part by the UC Noyce Initiative – see an opportunity.

Pie chart showing a tiny sliver labeled less than 0.05%, representing studies that consider health factors specific to women. Accompanying text reads: ‘Less than 0.5% consider health factors specific to women. Emily G. Jacobs (2023) Nature.’ The background is dark blue with white text and a chart.
More than 50,000 human-brain-imaging articles have been published since MRI came on the scene in the 1990s. Of those, less than 0.5% consider health factors specific to women. The STANDARD aims to change that. (Graphic courtesy Bowers WBHI)

That’s the driving idea behind The Gold STANDARD Project, which stands for Standardized Tool for Acquiring Reproductive Health Data. This groundbreaking effort, led by neuroscientist Edwina “Winnie” Orchard, Ph.D. with the Bowers WBHI, is focused on creating a universal framework to ensure researchers are asking the right questions about women’s health. Once finalized, the Gold STANDARD will allow researchers across the globe to collect data in a uniform way that will, in turn, support transformative, cross-disciplinary discoveries.

“Not having access to these data in a consistent and comprehensive manner perpetuates a cycle where we don’t have the answers we need because we didn’t ask the questions in a standardized way,” Orchard said. “And quality data really changes science. You can collect all the data in the world; but if the right questions aren’t asked, you just can’t get the answers that you need.”

Laying the foundation

The Gold STANDARD is one of the Bowers WBHI’s “moonshot” projects, according to those involved. Its goal is to build a comprehensive, evidence-based set of questionnaires and protocols for researchers around the globe to use when studying women’s health. In other words, it’s about laying the foundation so the entire field can stand on solid ground.
The project, which is funded in part by the UC Noyce Initiative, launched in 2024 and is bringing together leaders in neuroscience, endocrinology, gynecology, psychiatry and data science. Their goal: develop a standardized tool that will allow researchers everywhere to collect reproductive health history data in the same way, ensuring the questions asked are aligned, comparable and capable of fueling discovery.

Cycle diagram with four arrows in a loop. The steps read: ‘Don’t know if that variable is important,’ ‘Didn’t ask that question,’ ‘Don’t have the data,’ and ‘Can’t do that analysis.’ The cycle illustrates how missing questions or data prevent meaningful analysis.
This graphic illustrates how missing questions or data creates a unfavorable cycle, which in turn, can prevent meaningful analysis. (Graphic courtesy Bowers WBHI)


“The discussions we’re having are brilliant. We have menopause scholars, maternal brain experts, neuroscientists, reproductive psychiatrists and beyond all at the same table. Differing opinions  are part of the process; consensus built through dialogue is stronger than any single perspective,” Orchard said.

Driving discovery across life stages

The Gold STANDARD covers endocrine transitions spanning the full arc of life stages and experiences, which include menstruation, pregnancy, menopause, andropause, contraceptive use, hormone therapies and reproductive surgeries, among others. While these experiences are common, their effects on the brain remain poorly understood.

“People are often shocked to realize how little we know,” Orchard said. “We’re still asking fundamental questions about how pregnancy, birth control and menopause impact the brain long-term. These are huge gaps.”

By building consensus around what questions to ask and how to ask them, The Gold STANDARD will allow researchers across disciplines – from gynecology to neuroscience –  to compare findings, pool results and accelerate discoveries. A precedent for this kind of impact exists in the STRAW+10 guidelines, which gave the world a common language for staging menopause and revolutionized research, clinical care and patient outcomes. The Bowers WBHI’s Gold STANDARD takes this work further by measuring other hormonal and reproductive stages in a woman’s life.

Flowchart with dark blue hexagons showing steps in developing a measurement scale. Steps, left to right, are: Literature Review; Identify Existing Measures; Define Scale Scope; Rough Draft of Questions; Re-Draft; Feedback and Suggestions; Engage Experts and Leaders. Arrows connect the steps in sequence. Source: Boateng et al., 2018, Frontiers in Public Health.
In building the STANDARD, the Bowers WBHI team is following the best practices in scale development.

Collaboration at the core

For Orchard, collaboration is the key to success. Emily Jacobs, Ph.D., the Bowers WBHI’s founding director, emphasizes that sentiment.

“The Gold STANDARD is a perfect example of an ethos we have here at the Bowers WBHI which is: ‘science first, ego last,’” Jacobs said. “This is a radically collaborative effort with a host of experts, and with Winnie leading the way this tool will enable transformative discoveries for women’s health.”

From questions to discovery

The first phase of the project gathered existing questionnaires used to study women’s health. The team then began refining hundreds of questions into a core set that could be asked of research participants, balancing comprehensiveness with usability. The questions will be tested, translated and adapted for cultural contexts, and supported by a human-centered design process to ensure accessibility as well as response format optimization. This iterative process is intended to ensure the most usable data is captured. Having good data is becoming increasingly important with the ever-growing prevalence of generative artificial intelligence in numerous sectors, including medical research and innovation. 

“AI is hungry for good data,” Orchard noted. “If we ask the right questions in the right way, we’ll be able to see patterns in women’s brain health that we couldn’t possibly see before.”

By setting the research community up with the right questions, The Gold STANDARD is paving the way for breakthroughs that could help us understand cognitive changes during menopause, identify long-term effects of pregnancy complications and more.

What’s next

A workable draft of The Gold STANDARD is expected by early 2026, with pilot studies to follow soon after. Even before its release, interest has been overwhelming: researchers worldwide have asked to adopt the framework into their studies.

“This is about building something the field has been asking for, something that can finally allow us to study women’s health with the rigor and attention it deserves,” Orchard said. “If we do this right, the Gold STANDARD won’t just advance science –  it has the potential to change lives."

Developing the Gold STANDARD

In this video, neuroscientist Edwina “Winnie” Orchard, Ph.D. shares in more detail the development of the Gold STANDARD and how its application stands to transform women's health.

 

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