PMDD Roundtable
In July 2021, IAPMD launched a groundbreaking virtual Roundtable event—the first of its kind—designed to develop a strategic roadmap for advancing patient-centered outcomes in PMDD research and clinical care. We were proud to convene a diverse group of experts, united as the PMDD Community Coalition (PCC), to elevate the patient voice and shape the future of PMDD research.
This global coalition—comprised of patients, advocates, researchers, and healthcare professionals—shares a common goal: to place lived experience at the heart of the research conversation around PMDD. Until now, no such collective effort had existed.
Our aim was clear: to bridge the gap between patient stories and the professionals with the tools, funding, and influence to conduct research and drive systemic change. By spotlighting both the current state of evidence and the real-life experiences of those living with PMDD, we hope to inform more effective, compassionate, and realistic approaches to diagnosis, care, and long-term support.
It’s time to shift the paradigm—to move from reactive treatment models toward a more inclusive, proactive approach that prioritizes prevention, early detection, and ongoing management of premenstrual disorders.
This ambitious year-long project culminated in the creation of two vital resources:
Recordings from the Roundtable
PMDD: Have We Done Enough or Are We Just Starting (29:58)
This selective review features developments in the research literature on PMDD, highlighting key findings and promising future opportunities. Presented by Amanda Myers, DPSC, research coordinator for the PMDD Community Coalition project.
Living a Half-Life: PMDD Patient Experiences and Insights (19:03)
Members of the Patient Insight Panel share their lived experiences of PMDD and present findings from a series of focus groups held in spring 2021. Topics covered include symptoms, life impact, support, care and treatment experiences, research priorities, systemic gaps, and recommendations.
Patient Insights Paper Full
Loving Someone with PMDD: The Impact of PMDD on Partners (19:36)
The partner’s perspective on life with PMDD. Aaron Kinghorn, PMDD Partners Video Support Group Leader, shares insights from a survey on partners of women and AFAB individuals living with PMDD on how the disorder impacts their lives and relationships in positive, negative, and sometimes surprising ways.
Care Partner Survey Full | Executive Summary
Caring for PMDD Patients: Care Provider Perspectives (30:53)
Liisa Hantsoo, PhD, member of the IAPMD Clinical Advisory Board, presents insights from clinicians who care for people with PMDD and shares data from the 2018 Global Survey on Premenstrual Disorders regarding patient experiences with different types of providers.
Care Provider Experiences Paper Full | Executive Summary
Hotspots & Frontiers: Trends in Research Related to PMS & PMDD 1945-2018 (19:42)
What happened in PMDD research from 1945 to 2018? Katja Schmalenberger, PhD, presents findings from a recent study on PMDD research examining past trends and where the research is heading.
As a patient-led organization, IAPMD has been working for years to bring awareness to PMDD, a prevalent and little-understood premenstrual health condition. Thanks to a funding award through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), IAPMD built an amazing team to help shape the future of women’s menstrual health research.
How are you defining PMDD Research?
We define research as the creation of new knowledge and/or the use of existing knowledge in a new and creative way to generate new concepts, methodologies, and understandings. Research is critical to increasing our knowledge of PMDD. We hope our work on this project will help identify gaps in our knowledge that research can help fill. In particular, we hope to build recommendations in our strategic plan around four primary types of health research:
Population-based - to examine social, cultural, environmental, occupational, and economic factors that impact health status.
Biomedical - to understand normal and abnormal body functioning at the molecular, cellular, organ, or whole body system
Clinical - to improve the diagnosis and treatment of conditions (therapeutic interventions)
Health Services/Systems - to improve the effectiveness and efficiency of health professionals (practice) and healthcare systems (policy)
How do patients want these to look? What should be the focus?
What does ‘patient-centred’ mean?
‘Patient-centred’ means that the patients impacted are put at the very heart of the conversation about research, care, and clinical practice:
The focus is on the patients’ beliefs, preferences, and needs
Patient experiences lead it - “we are the ones who have lived through it”
The outcomes decided are meaningful to patients, not just what medical experts think patients want the outcome to be
This is a relatively new concept in research. PCORI was founded in the US in 2010. You can read more about it here.