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Published online by Cambridge University Press: 10 July 2025
Background: Experimental and clinical evidence suggest that Parkinson’s disease (PD) manifests differently between females and males, yet women have been underrepresented in PD clinical research, leading to a limited understanding of the sex- and gender-specific aspects of the disease. Understanding the needs of women with PD (WwPD) is critical Methods: Patient-centered outcomes-based mixed methods study. Phase 1: Qualitative focus groups, patient-centered discussions, led by female interviewers. Phase 2: Nationwide survey via the Qualtrics platform, informed by focus group findings. We report the Phase 1 preliminary results Results: We conducted 5 focus groups with 22 cisgender women. Mean age 60.5 (range: 44 -81) and disease duration of 6.82 years. Two main themes emerged: (1) Mental Health: participants reported significant emotional distress, altered self-image, and impacts on family, social, and professional life. (2) Physical Health and Health care: While some were satisfied with care, those with young-onset PD experienced misdiagnosis, dismissal, and inadequate information. Sexual health, and the overlap between menopause and PD symptoms, were highlighted. Most participants emphasized the benefits of physical activity, nutrition, and social support. Conclusions: Findings highlight significant health challenges in women, underscoring the need for gender-specific care and tailored support to improve healthcare outcomes