Why Gender-Specific Research Is Essential for Women Living with Parkinson’s

PD Avengers Co-Founder, Soania Mathur at Global Evidence in Medicine (GEM-PD): Women as The Missing Voice in Parkinson's” launch and panel

A few weeks ago, I had the opportunity to present at this year’s Critical Path Institute Global Impact Conference with a special focus on GEM-PD (Global Evidence for Medicine in Parkinson’s Disease) which is dedicated to globally advancing research on how Parkinson’s uniquely affects women.

And what are those unique challenges that women with Parkinson’s face?

From some of the limited literature, it seems that women with PD have more tremor, more levodopa-induced dyskinesias, restless leg syndrome and experience an increase in certain nonmotor symptoms such as mood and sleep disturbances, anxiety and depression, fatigue, apathy and pain. And studies have shown that at diagnosis, women tend to have poorer health related quality of life, more psychological distress and self-reported disability. And what’s more is that we hear from our community that the severity and impact of these symptoms vary according to the hormonal status of women, for example throughout the menstrual cycle or during and after menopause.

In order to look into this issue more in depth, the PD Avengers have partnered with Fox Insight to deploy three surveys. Our two completed questionnaires, one exploring women’s life experience with Parkinson’s and the other on PD in premenopausal, perimenopausal and postmenopausal women have been completed. The third one “Experiences of Women Living with PD – Fertility, Pregnancy and Childbirth” can be accessed through Fox Insight until the end of the year.

Please consider contributing your experience to this important project (https://foxinsight.michaeljfox.org/home).

Overall, we have found that there is a need for high-quality research to identify reliable gender-sensitive biomarkers and social markers, as well as develop treatments and guidelines that could translate into a more tailored clinical approach for the diagnosis and management of women with PD, leading to improved quality of life for women with this disease.

This last meeting was a premier gathering of leaders, innovators, and advocates shaping the future of medicine and the recognition that research into gender differences is vital. And that is the impetus behind these efforts - making a change in the way we do things in order for women to live their best lives despite their diagnosis.