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Clue data to help close the diagnosis gap

How do we overturn centuries of bias in healthcare research? By making the invisible, visible, through data.

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We are proud to announce a new initiative to leverage Clue’s collective, anonymised health data, to help close the diagnosis gap for the most common yet under-researched and underdiagnosed female health conditions.

With the new ‘My Health Record’ feature within the Clue app (available via the ‘More’ menu), users are now able to input confirmed diagnoses for 21 different health conditions including endometriosis, polycystic ovary syndrome (PCOS), premenstrual dysphoric disorder (PMDD), uterine fibroids, bleeding disorders, and anxiety disorders, for example.

We’re engaging with researchers from top institutions, such as the University of California, Berkeley, and the University of Exeter, and collaborating with the Menarche Menstruation Menopause and Mental Health (4M) consortium on the ways in which this unique dataset can be leveraged to help close the diagnosis gap in areas that have previously lacked large-scale data for research. Launched in 2021, 4M facilitates collaborative interdisciplinary research into how menstruation and menopause interact with mental health. 

Research projects already planned for the Clue community’s Health Record data in 2024 include:

  • Improving diagnostics for endometriosis and PMDD

  • Exploring the impact of the menstrual cycle on ADHD, anxiety, and depression

  • Shedding light on under-researched symptom patterns in early perimenopause. 

Just by toggling whether you do (or don't!) have a confirmed diagnosis for the listed conditions, you'll be helping us build the world’s largest dataset – bigger than any clinical research ever conducted on these conditions before – to uncover symptom patterns and new insights to help inform earlier diagnosis, and better care. 

Clue CEO, Audrey Tsang, says: “Together with our global user community, we are creating what will be the world’s largest data set that can match the menstrual and wider health symptom patterns of people with confirmed diagnoses with those who have the same patterns, but who don’t yet have a diagnosis. 

“By working with top researchers from around the world to leverage this data, we believe we will be able to make significant progress to accelerate and improve diagnostics and support for people with these conditions.”

Menstrual and mental health

Speaking of the upcoming research projects, Gemma Sharp, Associate Professor in Epidemiology in the School of Psychology at the University of Exeter, and Founder and Director of the 4M consortium says: I started the global 4M research consortium because I was astounded by the social stigma, lack of understanding and paucity of research in the field of women’s menstrual health, which is a big contributor to gender inequality. Half the world menstruates, and related health issues can have a major impact on quality of life, health and wellbeing. 

“Now, this new partnership between our global research consortium and Clue is a really exciting opportunity to conduct research at the intersection of two crucial areas: menstrual and mental health. This collaboration will allow us to gather and analyze data on a massive scale, enabling us to generate answers which will improve understanding of women's health, and ultimately improve lives.” 

Uncovering new insights into perimenopause

Associate Professor at the University of California, Berkeley, Prof. Kim Harley, says: “The impacts of perimenopause symptoms, including loss of sleep, hot flashes, mood, and mental health changes, are coming to the fore as a major factor in economic and health equality. However, there is still a lot we don’t know about the very earliest stages of perimenopause, the frequency and severity of symptoms, and individual factors that increase symptoms. This is tied to the lack of real-time data on large populations of people experiencing this highly individual and often gradual process.

“Working with Clue and its new perimenopause mode provides the opportunity to study and understand the perimenopausal process. Clue's data is unique in that it covers poorly understood periods of people's reproductive lives, including the transition from fertility to menopause, early onset menopause, and the experiences of people at the beginning stages of this process before they would otherwise be clinically identified.” 

“Many people experience symptoms without understanding them as part of the perimenopause process, and few people successfully receive clinical support for their symptoms. We hope that our research with Clue will help individual users understand more about this universal life stage.”

Illuminating the blindspots in female health

Currently, only 1% of traditional biopharma R&D funding goes into female health conditions, despite women spending nearly twice as much on healthcare as men. Conditions that disproportionately affect women (like endometriosis, migraine, and anxiety disorders) all attract much less funding relative to the disease burden, which considers the impact on the population in terms of quality of life, cost of care, and loss of productivity.

“What is politely called ‘the research gap’ is more of a research ‘canyon’ when it comes to female health, with the direct consequence that millions of women and people with cycles are living with symptoms that could benefit from medical support, but too often it takes far too long for them to access that support and treatment,” says Tsang. 

“We believe through this initiative we’ll be able to uncover insights and patterns that can be used to develop personalized insights to help people engage with their healthcare providers and accelerate the diagnosis process.” 

Tsang adds: “We know data is power and agency when it comes to health, and that it can play a critical role in making what is otherwise invisible, both visible and quantifiable. We’re excited to take the scale of Clue data and put it to work to specifically address the diagnosis gaps that cause so much frustration, confusion, and pain. Having a diagnosis can mean validation, relief, and most importantly, the opportunity to get the help and treatment one needs.”

The diagnosis gap by numbers

To paint a picture of the current diagnosis gaps and delays for women and people with cycles, here are some of the devastating statistics:

  • In 72% of cases, women will wait longer than men to get a diagnosis for the same health conditions.

  • 1 in 10 will have endometriosis, but only 40% will be diagnosed, with 7 to 12 years between the first onset of symptoms to the actual diagnosis.

  • 90% of women with PMDD are undiagnosed, with an average delay of 20 years before it is correctly identified.

  • 70% of women with PCOS are undiagnosed, and for a third of those with the condition, it will take two years to diagnose. Almost half of people with this condition had to see more than three healthcare providers to get a diagnosis.

  • 1 in 3 women with perimenopausal symptoms go undiagnosed and middle-aged women are more likely to have their symptoms brushed off as mental health related.

Privacy first

As a Germany-based company, Clue adheres to the world’s strictest data privacy laws. Data tracked within the Clue app (currently 15 billion data points), has long contributed to important scientific research helping to improve societal understanding of menstrual and reproductive health. 

Your data is only used for research if you have given us your consent and our research partners only work with anonymous data that cannot be traced back to any individual. In a recent survey, 85% of Clue community members indicated that they wanted their anonymised data to be used for health research – a responsibility we don’t take lightly.

Join the movement

If you’d like to have your anonymised health data and diagnoses contribute in helping close the diagnosis gap (once and for all!), download Clue and update your health record from the more menu, then tap on ‘My Health Record’. 

For press enquiries, contact press@helloclue.com.

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