PMDD Community Coalition (PCC) Roundtable

Background: Premenstrual dysphoric disorder (PMDD) is a chronic neuroendocrine condition and emerging women’s health and mental health issue. Thought to be an abnormal reaction in the brain to normal monthly hormone fluctuations, PMDD causes debilitating emotional, mental, and physical symptoms in the premenstrual phase of the menstrual cycle for 5 to 10 percent of women and AFAB individuals of reproductive age. Symptoms are so distressing and life-impairing that approximately 30 percent of patients will attempt suicide. Despite the severity and prevalence of PMDD, the diagnosis itself is new, and as yet, there are no targeted treatments for PMDD. Due to this, many patients with PMDD are considered treatment-resistant, exhausting all treatment options without finding significant relief. Furthermore, methodological challenges and financial constraints have discouraged much PMDD research. These factors compound the burden of disease on patients.

 

Proposed Solution to the Problem: The project team proposes the establishment of a PMDD Community Coalition (PCC), a collaborative of approximately 35 patient and professional stakeholders who will convene in a virtual roundtable to outline a strategic plan for PMDD outcomes research and guidelines for PMDD patient-centered outcomes research.

 

Objectives: This project aims to build a coalition of stakeholders in the PMDD community to develop a strategic plan and guidelines for PMDD PCOR that will minimize duplication and redundancy, emphasize communication and collaboration, and progress toward patient-centered outcomes in research and practice.

 

Activities: The PMDD Community Coalition will convene virtually for a two-day conference/summit called the PMDD Community Coalition (PCC) Roundtable. Patient stakeholders will also participate in regular discussion through the Patient Insight Panel (PIP) Facebook group. 

 

Projected Outcomes and Outputs: The project will produce three main deliverables: a literature review of PMDD research, a strategic plan for PMDD PCOR, and guidelines for PMDD PCOR; as well as establish two stakeholder groups: the PMDD Community Coalition (PCC) for inter-stakeholder collaboration and a Patient Insight Panel (PIP) specifically for patients and caregivers.

 

Patient and Stakeholder Engagement Plan: Patients and stakeholders will be engaged meaningfully at every stage of the project and play key roles in planning, implementation, and evaluation of the PCC Roundtable and development of the main deliverables (literature review, strategic plan, guidelines). Stakeholders can be separated into 10 groups, represented broadly as either patients (patients, patient advocates, caregivers, patient-led groups) or professionals (researchers, clinicians, industry leaders, training/academic institutions, professional associations, other).

 

Project Collaborators: There are no formal organizational collaborators or partners for the PCC Roundtable.