Throughout 2021, IAPMD undertook an exciting project to accelerate progress in PMDD research and shine a light on patient experiences and research priorities. With funding through the Patient-Centered Outcomes Research Insititute (PCORI), we built the first-ever global PMDD Community Coalition (PCC) with both patient and professional experts. In July, we held a landmark PMDD Roundtable to share insights and set the direction for future research.

This year-long project culminated in the development of two critical resources:

 

A Guide to Conducting Rigorous, Patient-Centered PMDD Research.

 

A Strategic Plan to Advance Patient-Centered PMDD Research

 
 

Watch Recordings from the 2021 IAPMD 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.

Selective Literature Review - Full | Summary

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 relationship 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.

 
 

+ Who is in the PCC?

The PMDD Community Coalition (PCC) is comprised of patient and professional experts in PMDD. You can view the full roster here and get to know our patient experts in the Patient Insight Panel here.

+ What does ‘patient-centered’ mean?

‘Patient-centered’ 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
  • It is led by patient experiences - ‘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 - with PCORI being founded in the US in 2010. You can read more about this here.

PCC Members can access the member page here.