News
Clue launches initiative to close diagnosis gap for female health conditions
The project is supported by top researchers and aims to leverage Clue’s data for new insights
The period tracking app Clue has announced a new initiative to leverage its 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, users will be 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.
Clue is 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 planned for Clue’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 and shedding light on under-researched symptom patterns in early perimenopause.
“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,” said Audrey Tsang, Clue CEO.
“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.”
Gemma Sharp, associate professor in epidemiology in the School of Psychology at the University of Exeter, and founder and director of the 4M consortium, 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.”
Professor Kim Harley, associate professor at the University of California, Berkeley, said: “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.”
Currently, 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, such as 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 people 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,” explained Tsang, Clue CEO.
“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.”
She added: “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.”
To paint a picture of the current diagnosis gaps and delays for women and people with cycles:
- In 72 per cent of cases, women will wait longer than men to get a diagnosis for the same health conditions.
- One in 10 will have endometriosis, but only 40 per cent will be diagnosed, with seven to 12 years between the first onset of symptoms to the actual diagnosis.
- 90 per cent of women with PMDD are undiagnosed, with an average delay of 20 years before it is correctly identified.
- 70 per cent 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.
- One in three women with perimenopausal symptoms go undiagnosed and middle-aged women are more likely to have their symptoms brushed off as mental health related.
As a Germany-based company, Clue says it adheres to the world’s strictest data privacy laws. Data tracked within the app, the company says, has long contributed to important scientific research helping to close the gender-data gap, to improve societal understanding of menstrual and reproductive health.
According to Clue, data is only used for research with the express consent of users – and research partners only work with anonymous data that cannot be traced back to any individual.
In a recent survey, 85 per cent of Clue users indicated that they wanted their anonymised data to be used for health research.
AI may help speed breast cancer diagnosis for high-risk women after abnormal mammograms, a study suggests.
Women with abnormal mammograms often wait weeks to learn whether they have breast cancer.
Researchers at UC San Francisco and UC Berkeley said an AI-guided workflow could help reduce that wait by quickly identifying those most likely to have the disease. Some women could move from imaging to evaluation, and sometimes biopsy, in a single day.
Dr Maggie Chung, first author of the study, said: “This is a really an exciting time.
“This moves us closer to personalised care, where we can tailor a plan so that each patient gets the right intervention at the right time.”
The study used an open-source AI model called Mirai.
The model was trained on hundreds of thousands of mammograms linked to patients’ cancer outcomes.
A mammogram is an X-ray scan of the breast used to look for signs of cancer. A biopsy involves taking a small tissue sample to test for disease.
The AI tool is designed to detect subtle patterns in screening mammograms and predict a woman’s cancer risk.
Researchers at UC San Francisco and UC Berkeley applied the model to more than 4,100 screening mammograms at Zuckerberg San Francisco General Hospital and Trauma Center.
Mirai identified 525 women, about 12.7 per cent of screened patients, as high risk.
Those patients could receive an interpretation of their mammograms immediately after the scan and have additional diagnostic imaging for suspicious areas on the same day.
Some women who needed biopsies were also able to have them on the same day.
The researchers said Mirai reduced the wait time for diagnostic evaluation from several weeks to about an hour.
For women who were ultimately diagnosed with breast cancer, it reduced the average wait for biopsy from more than two months to fewer than 10 days.
The researchers stressed that Mirai does not replace radiologists or make diagnoses on its own.
Instead, it acts as a triage tool to help physicians identify the patients who can benefit most from accelerated care.
The team analysed more than 114,000 archival mammograms before launching the programme, to ensure the model would capture enough high-risk patients without overloading the clinic with too many expedited evaluations.
The researchers said they hope AI will support a more personalised approach to breast cancer screening tailored to each patient’s breast cancer risk.
Chung said: “Right now, many women follow the same screening schedule but their individual risk can be very different.
“AI risk assessment gives us the chance to identify the women most likely to benefit from expedited care and get them what they need.”
Adam Yala, senior author of the study and a data scientist at UC Berkeley, said: “This is a powerful example of how AI can be a collaborative partner for physicians.
“It shows how we can improve care when we bring clinicians and data scientists together to design these systems.”
Women with primary infertility may face a higher risk of early menopause and reach it about a year earlier, a study suggests.
The findings suggest women with primary infertility may be more likely to enter menopause before the age of 45.
The increased risk appeared most notable among women with unexplained infertility or a history of endometriosis.
Dr Stephanie Faubion, medical director for The Menopause Society, said: “This study shows that women with primary infertility, specifically those with unexplained infertility or a history of endometriosis, were at risk for early menopause.
“Given that early menopause is linked to adverse long-term health consequences, these women may benefit from counselling that they are at risk of early menopause.
“This will allow them to monitor for early menopause and to seek treatment with hormone therapy, if indicated.”
Early menopause is usually defined as menopause before age 45, while premature menopause is menopause before age 40.
Women who experience menopause earlier may face symptoms for longer and have a higher risk of long-term health problems.
These can include cardiovascular disease, osteoporosis and neurocognitive disorders. Osteoporosis weakens bones, while neurocognitive disorders affect memory, thinking or brain function.
The study, highlighted by The Menopause Society, involved nearly 700 people, roughly half of whom had been diagnosed with primary infertility.
It found that women with a history of primary infertility underwent natural menopause about one year earlier than those without such a history.
Researchers found no association between infertility and premature menopause.
Infertility affects around one in six people globally and can have consequences beyond family planning.
Previous research has linked infertility with higher rates of cancer and cardiovascular disease, although causes vary and may involve genetic, hormonal, in-utero or lifestyle factors.
In-utero factors are influences that occur while a baby is developing in the womb.
Earlier studies looking at links between infertility and early or premature menopause have produced mixed results, with some not accounting for different types of infertility.
The new study suggested that women with unexplained infertility or a history of endometriosis may have an increased risk of early menopause.
Endometriosis is a condition where tissue similar to the lining of the womb grows elsewhere in the body. It can cause pain, heavy periods and fertility problems.
Known risk factors for early or premature menopause include tobacco use, low body mass index, not having given birth and starting periods at a younger age.
Women who have had more childbirths and those with a history of oral contraceptive use have previously been linked to later menopause.
The researchers said women with primary infertility may benefit from additional counselling because of the systemic and long-term health effects of early menopause.
They also said women should be encouraged to seek evaluation and treatment if they experience a new loss of menstrual cycles.
A non-profit has launched an endometriosis documentary featuring Amy Schumer and Marilyn Monroe as it pushes for changes in how the condition is treated and understood.
The Endometriosis Collective has launched to change how endometriosis is researched, treated and understood, starting with a documentary featuring stories from people including Amy Schumer and Marilyn Monroe.
The feature-length documentary, “End of the Cycle”, will premiere in New York on Tuesday, and The Endometriosis Collective is making the film free to stream online.
Schumer, a comedian, writer and actor, has previously spoken of how endometriosis left her “on the floor in pain, vomiting from the pain, the pain that nobody can see.”
Schumer is one of several celebrities featured in the documentary. Other contributors include dancer Julianne Hough, Olympic medallist Brittany Brown and actors Janel Parrish and Folake Olowofoyeku.
The Endometriosis Collective timed the documentary premiere to coincide with the 100th anniversary of Marilyn Monroe’s birth.
Monroe, who died in 1962, starred in films such as “Some Like It Hot” and “Gentlemen Prefer Blondes.”
According to a biography published in 1985, Monroe’s endometriosis was so severe that it destroyed her marriages, her wish for children, her career and ultimately her life.
The Endometriosis Collective said the documentary shares newly uncovered information about Monroe’s experience with endometriosis.
The non-profit said the information connects Monroe’s story to the experiences of women across generations, highlighting how far awareness, research and care still have to go.
A representative of the Marilyn Monroe Estate said: “By sharing this part of her story through ‘End of the Cycle,’ we hope to honour her legacy in a way that brings visibility to endometriosis, encourages more open dialogue and helps inspire the research needed to create change.”
As part of the premiere, The Endometriosis Collective is holding a panel discussion.
Schumer, Brown and Olowofoyeku, the documentary’s co-directors Sammy Jaye and Soraya Simi, and medical experts are due to be part of the premiere.
AbbVie’s Orilissa and Sumitomo Pharma’s Myfembree are among the approved drugs for endometriosis pain.
Hough, one of the participants in the documentary, starred in an Orilissa campaign in 2017.
Menopause1 week agoPerimenopause misinformation ‘putting women at risk’
Insight4 weeks agoNIH Grant terminations disproportionately impact minority scientists, research finds
Adolescent health4 weeks agoWUKA brings Period-Positive Pool Party to London Aquatics Centre to keep girls swimming through puberty
Insight3 weeks agoPCOS renamed after decade-long campaign to end ‘cyst’ misconception
Events4 weeks agoWHIS 2026 unveils agenda and first speakers for the leading women’s health summit
Hormonal health2 weeks agoNHS urged to update website following renaming of PCOS
Menopause4 weeks agoCBT shows promise for menopause insomnia and hot flashes
News6 days agoThree menopause innovators shortlisted for Femtech World Award
4 Comments