Women with Parkinson's disease

Data Sharing and Publications
,
1

Since it’s International Women’s History Month (woohooo!) I wanted to start a thread on some papers highlighting the experience of women with Parkinson’s disease. Some of my fave papers for this topic from the recent literature are:

Subramanian, I., Mathur, S., Oosterbaan, A., Flanagan, R., Keener, A.M. and Moro, E. (2022), Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies. Mov Disord, 37: 444-455. https://doi.org/10.1002/mds.28921**
**
Schaffner, S.L., Tosefsky, K.N., Inskter, A.M. et al. Sex and gender differences in the molecular etiology of Parkinson’s disease: considerations for study design and data analysis. Biol Sex Differ 16, 7 (2025). Sex and gender differences in the molecular etiology of Parkinson’s disease: considerations for study design and data analysis | Biology of Sex Differences | Springer Nature Link

Lehn, A.C., Lee, J.-Y., Sciacca, G., Patterson, S., Morton, A., Pun, P., Kamel, W.A., Picillo, M., Post, B., Tan, E.-K., Capato, T., Bloem, B.R., Auffret, M., Oosterbaan, A.M., Kapelle, W., Bruno, M.K., Kalia, L.V., Kordower, J.H. and Berg, D. (2026), The Management of Parkinson’s Disease Before, during and after Pregnancy—an MDS Scientific Issues Committee Review. Mov Disord Clin Pract, 13: 44-59. https://doi.org/10.1002/mdc3.70289

Also on this note, does anyone have sex hormone data by any chance??? Or any public databases that you know with such data?

5 Likes
2

I do not have papers to add, just to say that I’ve met Sonia a few times (second author on the first paper) and she is incredible – long-time member and past co-chair of our Patient Council.

Fox Insight has sex/hormone data! A few cross-sectional surveys get into it: https://foxden.michaeljfox.org/insight/explore/fox.jsp

3 Likes
3

Hi @ecebayram @jgottesman

thanks for starting this conversation!

We have been analyzing the MJFF FoxInsight data and are excited to be presenting it soon at the 2026 WPC congress in Phoenix (May 24-27). Hope to see many of you there. Manuscript will be coming soon. Likely submitted to the Special collection on Parkinson’s disease and sex differences in NPJ Parkinson’s disease journal special Collection series | Sex Differences in Parkinson’s Disease: Towards Personalized Understanding and Treatment

We are very excited about these data and the insights that will bring about women and PD. This would not have been possible without the shared efforts of scientists, clinicians, MJFF, CurePD UK, and especially women with PD and advocates. I am deeply grateful to be part of this group and contributing to this effort.

Be on the lookout for our paper(s) ;).

4 Likes
4

@betamaro, that’s great to hear! Please definitely share more about the manuscript (or abstract) when you are able :slight_smile: . TBD if I’ll be at WPC this year but if so will definitely swing by!

1 Like
5

@jgottesman i think the fox insight data include the survey though right? i was wondering about hormone level measurements. @betamaro did you happen to know any public databases featuring hormone levels & PD/Lewy by any chance??

2 Likes
6

Ah, sorry – you are correct. It has questions on whether your hormones have been impacted, menopause, did you take hormone replacement therapy, have blood tests and sentiment-type questions but not actual measurements. Hopefully @betamaro has a lead! :slight_smile:

2 Likes
7

This is a really important and super interesting topic! Thanks for giving the list of papers, @ecebayram: I want to educate myself more about this segment of the patient population, and your post comes at the perfect time to get myself started.

1 Like
8

There are different groups working on collecting and analyzing this type of data, but works are in progress.

If I identify already available datasets, I’ll certainly share/post it.

3 Likes