There is a fundamental gap in knowledge of how Parkinson’s manifests and affects women. The Parkinson’s advocate group, PD Avengers and a collection of women living with Parkinson’s have joined Fox Insight, a surveying platform created by the Michael J Fox Foundation, to design a series of online surveys to better understand the impact of a Parkinson’s diagnosis during specific phases of a woman’s life.
The data from two initial surveys on female health and home-life are now available (open access) in ‘FoxDen’ of the Fox Insight website with the data from the next three surveys on pre, peri and post menopause also available shortly.
A commentary published in Journal of Parkinson’s Disease to coincide with International Women’s Day by Dr Soania Mathur, Kat Hill and Dr Kristi LaMonica explores the self-image data in more detail: 61% of women reported that their Parkinson’s negatively impacts their self-image.
As a response to the paucity of research into how Parkinson’s differs in women according to their hormonal life stage as well as management guidelines specific to women, a series of questionnaires have been developed and deployed in collaboration with The Michael J. Fox Foundation, using their online platform, Fox Insight. This data is available to all researchers to further investigate the experience and impact that this disease has on women specifically, in an effort to improve quality of life.
Dr Soania Mathur, retired medical practitioner and woman living with Parkinson’s
With many thanks to the survey series designers: Dr. Soania Mathur with Dr. Kristi LaMonica, Kat Hill, Richelle Flanaghan, Gaynor Edwards, Diane Bramble, Joy Milne, Shilpa Rao, Sabela Avion, Dr Perdita Barran, Dr Tash Fothergill-Misbah, Dr Annelien Oosterbaan, Dr Ignacio Mata, Dr Annette Hand, Helen Matthews and to all those who have signed up to FoxInsight and completed these surveys. We are particularly keen to hear from more women with Young Onset Parkinson’s.
