UCC 'world-first' study looking at hormonal impact on women with Parkinson’s disease

University College Cork (UCC) researchers and the inventor of a self-care app for people with Parkinson’s disease are launching the world’s first-ever study to find out more about the impact hormonal changes in women have on their symptoms.

Professor Aideen O’Sullivan and Dr. Lucy Collins Stack from the UCC Department of Anatomy and Neuroscience are working with the developer of the My Moves Matter app, Richelle Flanagan from Dublin, who was diagnosed with Young Onset Parkinson’s disease after the birth of her daughter.

Ms. Flanagan, who developed My Moves Matter to track women’s symptoms across their menstrual cycle, said that 40% o people living with Parkinson’s are women and 30% are under the age of 60. 

She believes that specific treatment for women with the illness is an area that has been long overlooked.

“My experience of the impact of my hormone fluctuations during my menstrual cycle and subsequently going through the menopause and the effect on my Parkinson’s symptoms led me to develop the My Moves Matter as a tool for women to be able to validate what they experience during these hormonal changes so that they can advocate for themselves,” she said.

“They will have a means of showing their neurologist the impact of their hormones on their Parkinson’s symptoms and get appropriate treatment.” 

The study 

The study, supported by the Health Innovation Hub Ireland (HiHi) and Enterprise Ireland, seeks the help of women with Parkinson’s Disease, who are being asked to track their symptoms using the My Moves Matter app.

The research will be the first in the world to track how hormonal changes in women with Parkinson’s impact their symptoms. 

It is hoped that their findings will aid patient-specific treatment and management of Parkinson’s disease.

“The study with UCC is so important for women with Parkinson’s as it will be the first prospective study of its kind to track the impact of the menstrual cycle on Parkinson’s symptoms,” said Ms. Flanagan.

“There are no clinical guidelines for the management of symptoms worsening in relation to hormonal changes in women.

“My hope is that this study may help to lay the foundations for the development of such guidelines, which would be transformative for many women who have worsening of their symptoms for 1-2 weeks of every month which can be very debilitating leading to work absences, inability to look after their families and often giving up work.” 

Patient-specific treatment 

According to Professor O’Sullivan, who is the head of UCC’s Department of Anatomy and Neuroscience, there is an increasing global awareness of what she said was an ‘unmet need’ for patient-specific treatment and management of Parkinson’s Disease.

“This is particularly important for women with Parkinson’s, who have unique needs,” said Professor O’Sullivan.

“Women may experience Parkinson’s symptoms differently at distinct stages of their monthly menstrual cycle, and of their reproductive lifecycle.” 

Professor O’Sullivan said the involvement of patients in the design and dissemination of the research was ‘critical’ for its success and described Richelle Flanagan as ‘such a strong and effective advocate for people with Parksinson’s, especially for young women who are struggling to manage the many and varied symptoms’.

Dr. Lucy Collins Stack said the lived experience of Richelle enriched the research greatly.

“It strengthens its quality and relevance and ultimately its impacts on the patient community.”

The app can be found at mymovesmatter.com/get-the-apptarget="_blank" rel="noopener noreferrer"> and the UCC survey can be accessed at My Moves Matter UCC Parkinsons Study.