A global research consortium led by a University of Exeter expert is partnering with leading menstrual health app Clue, creating one of the world’s largest datasets of under-researched and under-diagnosed female health conditions.
Clue is used by more than 10 million women and people with cycles across 190 countries and 20 languages. The new collaboration is expected to accelerate research, to help close the diagnosis gap for the most common yet under-researched and under-diagnosed female health conditions.
Dr Gemma Sharp at the University of Exeter, leads the Menarche, Menstruation, Menopause and Mental Health (4M) consortium. Launched in 2021, thanks to a GW4 Building Communities Generator Award, 4M facilitates collaborative interdisciplinary research into how menstruation and menopause interact with mental health. She said: “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 analyse data on a massive scale, enabling us to generate answers which will improve understanding of women’s health, and ultimately improve lives.”
Clue is a data and science-driven period tracking and reproductive health app. The new initiative will leverage its collective, anonymised health data. With the new ‘My Health Record’ feature within the Clue app, users can 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.
Clue’s CEO Audrey Tsang said: “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.”
Only one per cent 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.
To paint a picture of the current diagnosis gaps and delays for women and people with cycles:
- 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 4 will be diagnosed, with an average of about eight 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.
Clue is already engaging with researchers from top institutions and collaborating with the 4M consortium on the ways in which this unique dataset can be best leveraged to help close the diagnosis gap in areas that have previously lacked large-scale data for research. Projects already identified for 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.
Audrey Tsang continued: “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. We believe through this initiative we’ll be able to uncover insights and patterns that can be used to develop personalised insights to help people engage with their healthcare providers and accelerate the diagnosis process.
“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.”