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Cardiovascular disease is the leading causing of death in women globally, and also a serious long term health risk for those of us living with PCOS. But there is very little known of the impact of the two most common medications used in the management of PCOS (the oral contraceptive pill [OCP] and metformin) on the cardiovascular health in those living with PCOS; both medications being ones that patients stay on for a long period of time.
That’s where the COMET-CVD study comes in. It’s being undertaken at the University of Pennsylvania School of Medicine and funded by POCRI (Patient-Centred Outcomes Research Institute), and led by Professor Anuja Dokras.
The study will be looking at PCOS patient data from both the US and the UK, identifying adult women with PCOS in the IMRD dataset from the United Kingdom (>123,000) and Optum dataset from the United States (>400,000). The research award page on POCRI explains as follows, “The objectives of this study are to compare the risk of heart disease in women with PCOS prescribed oral contraceptive pills (OCPs), metformin, both or neither. Due to the significant costs and time required to recruit new patients and follow up for several years to assess heart disease, the project team will use novel methods to emulate the gold-standard clinical trial using readily available, real-world observational datasets that are large and diverse …….. They have data available over 20 years and outcomes will be evaluated from the diagnosis of PCOS or entry into the healthcare system.”
There is a big move globally to ensure the patient voice is represented in discussions and efforts that affect patients, and the COMET-CVD Study has really centred patients by inviting patient advocates onto the advisory board for the duration of the 3+ years of its lifespan. Verity is honoured to have been invited to represent UK patients, and joined by US patient advocacy group PCOS Challenge, and two advocates with a special focus on the subject; Ashley of @PCOSGurl (who established the #Heart4PCOS movement) and Angela of @PCOSNutrition.
Verity Trustee Caroline travelled over to Penn State University this week for the first advisory board meeting. Caroline, and the other patient advocates each gave a presentation to the research team on their view of the lived PCOS patient experience and the relation / perception of CVD for the patient group they are representing. Caroline shared an overview of the work Verity does in the UK and globally, as well as a snapshot of cardiovascular disease risk:
Also shared with the other Advisory Board members, which include experts in PCOS, heart health, pregnancy, epidemiology and biostatistics, through some of the relevant CVD data of our 2023 PCOS Patient Consultation. Our survey found that of long term health risks associated with PCOS, that CVD is around the ‘middle of the pack’ as far as what concerns those with PCOS. It also found that that worry is elevated in those from Scotland, and also Black and Brown women – all of whom who have the highest risk of CVD.
This is such an exciting – and unique – research study – one which we are really privileged to be an integral part of. Metformin and birth control pills are often the default and first line treatment for those of us with PCOS, and yet there is no data on whether these elevate or even minimise our risk of developing cardiovascular disease. The findings of this study could actually change that first line of treatment and may open up doors to exploring new PCOS medications.
We will keep you updated on the study as things evolve over the coming three years – but you can also sign up for updates on the POCRI award page.
If you have any questions about this study, or other research projects you can get in touch with us.
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