Endometriosis Pelvic Pain Interdisciplinary Cohort Data Registry

Conditions

Endometriosis

Keywords

Endometriosis, Chronic pelvic pain, Dyspareunia

Brief summary

The purpose of this data registry is to prospectively collect data from patients referred to an interdisciplinary clinic for pelvic pain and endometriosis to investigate long-term patient outcomes, prognosis, predictors, causes, and treatment of pelvic pain and endometriosis.

Detailed description

The BC Women's Centre for Pelvic Pain and Endometriosis is the tertiary referral centre for endometriosis/pelvic pain in British Columbia, Canada. The Centre offers a unique interdisciplinary approach including minimally invasive surgery, hormonal and other medical therapy, pain education, physiotherapy, and CBT/mindfulness. After informed consent, patients prospectively consent to data collection in the online registry. The registry consists of patient intake questionnaires (including validated measures), physical and ultrasound examination, review of medical records, surgical findings, and annual outcomes to 5 years. The online data registry is housed in the Research Electronic Data Capture (REDCap) platform located at BC Children's Hospital.

Rojas HE, Prior JC, Noga H, Williams C, Bedaiwy MA, Lee CE, Allaire C, Yong PJ.

2026-04-23

10.1177/15409996261443813

Mental Health Outcomes of Endometriosis Patients during the COVID-19 Pandemic: Impact of Pre-pandemic Central Nervous System Sensitization.

Liu YD, Noga H, Allaire C, Bedaiwy MA, Lee CE, Williams C, Booth A, Galea LAM, Kaida A, Ogilvie GS, Brotto LA, Yong PJ.

2024-01-191 citations

10.1016/j.jpain.2024.01.346

Establishing the Australian National Endometriosis Clinical and Scientific Trials (NECST) Registry: a protocol paper

Cecilia Ng, Andrew G Michelmore, Gita D. Mishra, Grant W. Montgomery, Peter A. W. Rogers et al. (6 authors)

Reproduction and Fertility2023-04-014 citations

10.1530/raf-23-0014

Ohnut Versus a Waitlist Control for the Self-management of Endometriosis-Associated Deep Dyspareunia: Protocol for a Pilot Randomized Controlled Trial

Sandy Zhang, Rebecca G K MacLeod, Gurkiran Parmar, Natasha L. Orr, Kate Wahl et al. (10 authors)

JMIR Research Protocols2023-01-245 citations

10.2196/39834

Recreational Cannabis Use Before and After Legalization in Women With Pelvic Pain

Roxana Geoffrion, Emily C. Yang, Nicole Koenig, Lori A. Brotto, Alasdair M. Barr et al. (9 authors)

Obstetrics and Gynecology2020-12-0121 citations

10.1097/aog.0000000000004207

Negative Sliding Sign during Dynamic Ultrasonography Predicts Low Endometriosis Fertility Index at Laparoscopy.

Alfaraj S, Noga H, Allaire C, Williams C, Lisonkova S, Yong PJ, Bedaiwy MA.

2020-05-132 citations

10.1016/j.jmig.2020.05.003

Deep Dyspareunia, Superficial Dyspareunia, and Infertility Concerns Among Women With Endometriosis: A Cross-Sectional Study

Kate Wahl, Natasha L. Orr, Michelle Lisonek, Heather Noga, Mohamed A. Bedaiwy et al. (11 authors)

Sexual Medicine2020-02-1243 citations

10.1016/j.esxm.2020.01.002

Phenotyping Sexual Pain in Endometriosis Using the Central Sensitization Inventory

Natasha L. Orr, Kate Wahl, Heather Noga, Catherine Allaire, Christina Williams et al. (9 authors)

The Journal of Sexual Medicine2020-01-2323 citations

10.1016/j.jsxm.2019.12.019

East and South East Asian Ethnicity and Moderate-to-Severe Endometriosis.

Williams C, Long AJ, Noga H, Allaire C, Bedaiwy MA, Lisonkova S, Yong PJ.

2018-06-2025 citations

10.1016/j.jmig.2018.06.009

Interventions

OTHERData Registry

Data Registry

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

FEMALE

Healthy volunteers

No

Inclusion criteria

* All new and re-referred patients at the BC Women's Centre for Pelvic Pain and Endometriosis.

Exclusion criteria

* Patients at the BC Women's Centre for Pelvic Pain and Endometriosis seen for reasons other than chronic pelvic pain and/ or endometriosis as well as patients who decline to complete the online questionnaire.

Design outcomes

Primary

Measure	Time frame	Description
Patient-reported severity of chronic pelvic pain	3 months	Measured on a scale of 0 (no pain) to 10 (worst pain imaginable)

Countries

Canada

Outcome results

None listed