Enhancing care in Parkinson’s disease:
Sex and gender-informed policy as a gateway to precision medicine and care
Neurological diseases, and Parkinson’s disease (PD) in particular, pose an enormous challenge to individuals and economies around the world: the number of people living with Parkinson’s disease is estimated double by 2030, and its indirect costs relating to early retirement or caregiver productivity losses are significantly higher than its direct medical costs. At the same time, Parkinson’s disease must be addressed with a sex and gender lens.
As highlighted in the WBP-commissioned Economist Impact White Paper, Sex, gender and the brain: Towards an inclusive research agenda, although males are more likely to be diagnosed with Parkinson’s, females appear to have more negative effects and worse reactions to existing medicines. Research also shows that the caregiver burden is high among Parkinson’s caregivers (the vast majority being women), who likely face emotional, social, physical, and financial challenges as a result.
This report is the result of a multistakeholder and multidisciplinary closed-door virtual roundtable on enhancing care in Parkinson’s disease, organised and moderated by the Women’s Brain Project, and held on 29 November 2023: World Movements Disorder Day. The roundtable, held under the Chatham House Rule, brought together key global and European policy-led stakeholders, PD experts and people with lived experience of Parkinson’s disease in a discussion structured around three key areas: patients, caregivers and the policy landscape.
Emphasising the importance of including lived experience and taking into account sex and gender-specific needs, the discussion centred on what tangible global, EU and national level-policy solutions are needed to enhance care in Parkinson’s and tackle the challenges facing both people living with Parkinson’s disease and their caregivers, to enhance their quality of life. Participants agreed that urgent action was needed to ensure precision medicine in the PD patient journey. Much more can and needs to be done to improve the quality of life of people affected by Parkinson’s disease.
Throughout the roundtable, a number of recommendations were made to enable and enhance precision medicine and care in Parkinson’s disease.
The roundtable report is available here.
This initiative is supported by sponsorship from AbbVie. The content of the roundtable and this report were developed independently by the Women’s Brain Project team.
The WBP would like to thank all participants who took the time to share their experience, expertise and insights at the roundtable on enhancing care in Parkinson’s disease (PD) on 29th November 2023.
The roundtable was held under the Chatham House Rule, meaning that participants are free to use the information received, but neither the identity nor the affiliation of the speaker(s), nor that of any other participant, may be revealed.