Patient Research Advisory Board

The Endometriosis Patient Research Advisory Board (PRAB) informs and guides the program’s research mandate.  Board members are active partners in setting research priorities, writing grant applications, undertaking appropriate research tasks and translating research findings in a format that is easily accessible to patients and their families.

 

APPLY TO JOIN THE BOARD

Who are we

The Endometriosis Patient Research Advisory Board is a group of people who volunteer with the Endometriosis Pelvic Pain Laboratory and share a willingness to contribute their time, opinions, views and experiences to further endometriosis research. 

Board members meet once every two months and are active partners in setting research priorities that are meaningful for those with endometriosis. This includes such activities as writing grant applications, undertaking appropriate research tasks and translating research findings in a format that is easily accessible to patients and their families.

Members also often take an active role as patient partners in different research projects brought forward by the Endometriosis Pelvic Pain Laboratory. 

Accomplishments

  • Written letters of support for 7 successful grant applications
  • Engaged in local knowledge translation projects and events
  • Represented the patient voice at team meetings and events
  • Contributed to the publication of a quarterly newsletter
  • Collaborated on 6 research projects as partners

Current Projects

Development of a Patient-Reported Outcome Measure for Deep Painful Sex
EndoPhoto: A Photovoice Study of East/South-East Asian People with Endometriosis and Chronic Pelvic Pain 

Past Projects

Endocation: A pilot randomized controlled trial of an endometriosis education program for secondary school students
Social Media Campaign to raise awareness of a new research for Sex, Pain & Endometriosis
EndoAct Canada: An advocacy initiative to drive policy action for people with endometriosis in Canada
Endometriosis & Painful Sex: Piloting Digital Storytelling
Sex, Pain & Endometriosis Website http://endopain.endometriosis.org/
2019 Sexual Pain & Endometriosis Workshop
Video series on endometriosis, painful sex and central sensitization https://www.youtube.com/channel/UCH-fSMyjueIrcDv5jskJriw

Logo Concept

The three lines represent the three parts of this group as well as the incisions from surgery and how that connects everyone between one another. Using a more stylized triangle, it represents the pelvic area giving it a more organic style that warms the logo up.

Got Questions?  Please contact the Research Manager, Heather Noga at cppresearch@cw.bc.ca