How WPC Led Me To Do Research In Women With Parkinson’s
It all started with the 5th World Parkinson Congress in Kyoto in 2019, where I met many women with young onset Parkinson's (YOPD), and we stayed connected, even though we were in different continents. One of the things we noticed was that our Parkinson's symptoms got worse around the menstrual cycle and that many women were reporting the same issue in closed social media support groups.
So we decided to do a survey of women with Parkinson's in relation to the impact of their hormones on their Parkinson’s symptoms. We disseminated the survey through two grassroots groups that formed out of the WPC in Kyoto, the Women's Parkinson's Project, and the PD Avengers. Over 240 women globally took part, with 74% experiencing a worsening of their symptoms around the menstrual cycle, and 57% reported it was more difficult to manage their symptoms during perimenopause. Almost 90% of the women revealed that their neurologists had not discussed the impact of hormones on their Parkinson's symptoms or explored hormonal treatments like hormone replacement therapy.
To address the concerns raised by women with Parkinson's, two webinars were organized in collaboration with the Cure Parkinson's Trust and the PMD Alliance. Over 600 women attended these webinars, highlighting various issues related to their condition. This led to my co-authoring a paper on the unmet needs of women with PD with two other women with YOPD, Dr. Sonia Mathur and Dr. Annelien Oosterbaan led by Dr. Indu Subramanian and supported by Professor Elena Moro and Dr. Adrienne Keener.
Within this, we identified the need to have a tool for women to be able to track their Parkinson's symptoms across the menstrual cycle, so they could validate what it was they were experiencing and reporting, so the clinicians could act upon the information.
This led me to take part in a patient-centred digital hackathon run by DayOne in Switzerland during lockdown at the end of 2021, where I proposed the development of a prototype of an app where women could track their Parkinson's symptoms across the menstrual cycle. We won the competition, and with that came with a prize funding. I matched the prize funds with funding through a feasibility fund in Ireland, alongside taking part in a nine-month Enterprise Ireland start-up programme, which came with a stipend. All this funding helped us to develop the My Moves Matter app where women can record and monitor any changes or worsening of symptoms, providing valuable data for their healthcare providers. This information can help clinicians make informed decisions and tailor treatment plans to address the specific needs of women with Parkinson's.
The original women’s survey we did was subsequently validated by surveys done by the Vall D’Hebron group (Abstract P01.25) and the MJ Fox Insight women’s survey. And further validated by a small study in YOPD women.
However, to develop clinical guidelines, we need prospective data. I approached Professor Aideen Sullivan, Head of the Department of Anatomy and Neuroscience in University College Cork to collaborate on a pilot study to track women’s symptoms across the menstrual cycle. It took us a year to get there but thanks to support of Enterprise Ireland Innovation funding and support of the Health Innovation Hub, we launched the pilot research study in late January 2024. Ethics has been expanded to include women in the USA as well as Europe and to include women of all ages so we can compare symptoms across the different hormone stages including pre menopause, pregnancy, perimenopause, menopause, and post menopause. The study is actively recruiting at: https://www.mymovesmatter.com/uccpilotstudy.
We are also collaborating with Professor Elena Moro, president elect of the European Academy of Neurology on a France Parkinson funded study in four French neurological centres. This study will specifically focus on tracking women with PD who are still menstruating and will include an intervention arm.
It has been a journey from my first WPC 2019 where I found my PD tribe both of people with PD but also network of supportive clinician, health professionals and researchers. I launched the My Moves Matter app at WPC 2023 and submitted several abstracts on women with PD with patients and clinicians as co-authors. And now I look forward to us having results from our pilot studies on women with PD and the impact of hormones to submit as an abstracts for WPC 2026.
It seems timely given the recent signing of an executive order by US President Biden to invest $12 billion in new funding for women’s health research. A Memorandum on the White House Initiative on Women’s Health Research states “To address pervasive gaps in our knowledge of women’s health, we must accelerate research on the unique health needs of women across their lifespans.”
Women make up more than 40% of people living with PD and it is time we addressed their specific care needs. And if this executive order is successful, it will open huge research opportunities within the PD community to accelerate personalized therapies and find ways to slow the progression for all.
Resources:
https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.28921
https://www.mymovesmatter.com/get-the-app
Richelle Flanagan was a WPC 2023 Parkinson Ambassador. She is a Registered Dietitian and Co-Founder My Moves Matter. She resides in Ireland.
Ideas and opinions expressed in this post reflect that of the author solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®