EndometriosisEPPICNCT02911090
Endometriosis Pelvic Pain Interdisciplinary Cohort Data Registry
An observational study of Endometriosis, run by BC Women's Hospital & Health Centre at 1 site in Canada.
Trial 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. Read more about this study
- Who is it for?
- Any age, women only
- Conditions the study is for
- Endometriosis
- What is being tested?
- Data Registry
- How many people
- 5,000 participants
- Where
- 1 siteCanada
- Study dates
- Jun 2016to Dec 2028
- How long will I take part?
- 3 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- Women only
- No healthy volunteers
- Child, Adult, Older adult
Study population: Patients at the BC Women's Centre for Pelvic Pain and Endometriosis seen for chronic pelvic pain and/ or endometriosis
Who may be able to join
- All new and re-referred patients at the BC Women's Centre for Pelvic Pain and Endometriosis.
Who cannot join
- 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.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Canada1 site
BC Women's Hospital & Health Centre
Vancouver, British Columbia, V6H 3N1
About this study
Official title: Endometriosis Pelvic Pain Interdisciplinary Cohort (EPPIC) Data Registry
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.
Read the 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.
- Conditions
- Endometriosis
- Being tested
- Data Registry
- Keywords
- Endometriosis, Chronic pelvic pain, Dyspareunia
- Medical subject headings
- Endometriosis, Dyspareunia
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Data RegistryOther
Data Registry
What is being measured
The primary outcome is the main question the study is designed to answer.
Patient-reported severity of chronic pelvic pain
Measured on a scale of 0 (no pain) to 10 (worst pain imaginable)
Measured: 3 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted22 Sep 2016 (estimated)
- Study startJun 2016
- Primary completionDec 2028 (estimated)
- Study completionDec 2028 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (21)Papers the sponsor has linked to this study.
- Other trials for EndometriosisStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 5,000 participants (estimated)
- Target duration
- 3 Years
Sponsor and investigators
- Lead sponsor
- BC Women's Hospital & Health Centre
- Sponsor type
- University, hospital or other
- Collaborators
- UBC Department of Obstetrics and Gynaecology, Canadian Institutes of Health Research (CIHR)
- Responsible party
- Principal investigator, Paul Yong, BC Women's Hospital & Health Centre
- Investigators
- Paul Yong, MD PhD FRCSC, Principal investigator, BC Women's Hospital & Health Centre
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02911090
- Sponsor's protocol ID
- H16-00264
- Acronym
- EPPIC
- Status last verified
- Aug 2024
- First submitted
- 31 Aug 2016
- Last updated
- 7 Aug 2024
- Results posted
- No
- Data monitoring committee
- No
- Individual data sharing
- No
Publications
Orr NL, Wahl KJ, Lisonek M, Joannou A, Noga H, Albert A, Bedaiwy MA, Williams C, Allaire C, Yong PJ. Central sensitization inventory in endometriosis. Pain. 2022 Feb 1;163(2):e234-e245. doi: 10.1097/j.pain.0000000000002351.
PubMed 34030173McPeak AE, Allaire C, Williams C, Albert A, Lisonkova S, Yong PJ. Pain Catastrophizing and Pain Health-Related Quality-of-Life in Endometriosis. Clin J Pain. 2018 Apr;34(4):349-356. doi: 10.1097/AJP.0000000000000539.
PubMed 28731958Bao C, Noga H, Allaire C, Williams C, Bedaiwy MA, Sadownik LA, Brotto LA, Smith KB, Yong PJ. Provoked Vestibulodynia in Women with Pelvic Pain. Sex Med. 2019 Jun;7(2):227-234. doi: 10.1016/j.esxm.2019.03.002. Epub 2019 Apr 4.
PubMed 30954496Ng N, Wahl K, Orr NL, Noga H, Williams C, Allaire C, Bedaiwy MA, Yong PJ. Endometriosis and Negative Perception of the Medical Profession. J Obstet Gynaecol Can. 2020 Mar;42(3):248-255. doi: 10.1016/j.jogc.2019.08.034. Epub 2019 Dec 18.
PubMed 31864912Williams C, Long AJ, Noga H, Allaire C, Bedaiwy MA, Lisonkova S, Yong PJ. East and South East Asian Ethnicity and Moderate-to-Severe Endometriosis. J Minim Invasive Gynecol. 2019 Mar-Apr;26(3):507-515. doi: 10.1016/j.jmig.2018.06.009. Epub 2018 Jun 20.
PubMed 29935381Arion K, Orr NL, Noga H, Allaire C, Williams C, Bedaiwy MA, Yong PJ. A Quantitative Analysis of Sleep Quality in Women with Endometriosis. J Womens Health (Larchmt). 2020 Sep;29(9):1209-1215. doi: 10.1089/jwh.2019.8008. Epub 2020 Mar 13.
PubMed 32176592Geoffrion R, Yang EC, Koenig NA, Brotto LA, Barr AM, Lee T, Allaire C, Bedaiwy MA, Yong PJ. Recreational Cannabis Use Before and After Legalization in Women With Pelvic Pain. Obstet Gynecol. 2021 Jan 1;137(1):91-99. doi: 10.1097/AOG.0000000000004207.
PubMed 33278297Orr NL, Huang AJ, Liu YD, Noga H, Bedaiwy MA, Williams C, Allaire C, Yong PJ. Association of Central Sensitization Inventory Scores With Pain Outcomes After Endometriosis Surgery. JAMA Netw Open. 2023 Feb 1;6(2):e230780. doi: 10.1001/jamanetworkopen.2023.0780.
PubMed 36848090Shum LK, Bedaiwy MA, Allaire C, Williams C, Noga H, Albert A, Lisonkova S, Yong PJ. Deep Dyspareunia and Sexual Quality of Life in Women With Endometriosis. Sex Med. 2018 Sep;6(3):224-233. doi: 10.1016/j.esxm.2018.04.006. Epub 2018 May 22.
PubMed 29801714Orr NL, Noga H, Williams C, Allaire C, Bedaiwy MA, Lisonkova S, Smith KB, Yong PJ. Deep Dyspareunia in Endometriosis: Role of the Bladder and Pelvic Floor. J Sex Med. 2018 Aug;15(8):1158-1166. doi: 10.1016/j.jsxm.2018.06.007.
PubMed 30078464Tucker DR, Noga HL, Lee C, Chiu DS, Bedaiwy MA, Williams C, Allaire C, Talhouk A, Yong PJ. Pelvic pain comorbidities associated with quality of life after endometriosis surgery. Am J Obstet Gynecol. 2023 Aug;229(2):147.e1-147.e20. doi: 10.1016/j.ajog.2023.04.040. Epub 2023 May 4.
PubMed 37148956Yosef A, Allaire C, Williams C, Ahmed AG, Al-Hussaini T, Abdellah MS, Wong F, Lisonkova S, Yong PJ. Multifactorial contributors to the severity of chronic pelvic pain in women. Am J Obstet Gynecol. 2016 Dec;215(6):760.e1-760.e14. doi: 10.1016/j.ajog.2016.07.023. Epub 2016 Jul 18.
PubMed 27443813Yong PJ, Williams C, Bodmer-Roy S, Ezeigwe C, Zhu S, Arion K, Ambacher K, Yosef A, Wong F, Noga H, Britnell S, Yager H, Bedaiwy MA, Brotto LA, Albert AY, Lisonkova S, Allaire C. Prospective Cohort of Deep Dyspareunia in an Interdisciplinary Setting. J Sex Med. 2018 Dec;15(12):1765-1775. doi: 10.1016/j.jsxm.2018.10.005. Epub 2018 Nov 13.
PubMed 30446474Allaire C, Williams C, Bodmer-Roy S, Zhu S, Arion K, Ambacher K, Wu J, Yosef A, Wong F, Noga H, Britnell S, Yager H, Bedaiwy MA, Albert AY, Lisonkova S, Yong PJ. Chronic pelvic pain in an interdisciplinary setting: 1-year prospective cohort. Am J Obstet Gynecol. 2018 Jan;218(1):114.e1-114.e12. doi: 10.1016/j.ajog.2017.10.002. Epub 2017 Oct 12.
PubMed 29031895Rojas HE, Prior JC, Noga H, Williams C, Bedaiwy MA, Lee CE, Allaire C, Yong PJ. Mid-Cycle Pain in Endometriosis: Clinical Correlations and Potential Etiological Factors. J Womens Health (Larchmt). 2026 Aug;35(8):790-799. doi: 10.1177/15409996261443813. Epub 2026 Apr 23.
PubMed 42026880
Study at a glance
From the registry record, last updated by the sponsor on 7 Aug 2024. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Endometriosis Pelvic Pain Interdisciplinary Cohort (EPPIC) Data Registry
- ClinicalTrials.gov ID
- NCT02911090
- Acronym / sponsor ID
- EPPIC / H16-00264
- Conditions
- Endometriosis
- Keywords
- Endometriosis, Chronic pelvic pain, Dyspareunia
- Study type
- Observational
- Recruitment status
- Enrolling by invitation
- Enrolment
- 5,000 participants (estimated)
- Lead sponsor
- BC Women's Hospital & Health CentreUniversity, hospital or other
- Collaborators
- UBC Department of Obstetrics and Gynaecology, Canadian Institutes of Health Research (CIHR)
- Study start
- Jun 2016 (actual)
- Primary completion
- Dec 2028 (estimated)
- Study completion
- Dec 2028 (estimated)
- First posted
- 22 Sep 2016 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 3 Years
Who may qualify
- Sex
- Female only
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Patients at the BC Women's Centre for Pelvic Pain and Endometriosis seen for chronic pelvic pain and/ or endometriosis
Key inclusion criteria (1 listed)
- All new and re-referred patients at the BC Women's Centre for Pelvic Pain and Endometriosis.
Key exclusion criteria (1 listed)
- 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.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Data RegistryData Registry | Other | – |
Primary outcome
Patient-reported severity of chronic pelvic pain
Time frame: 3 months
Measured on a scale of 0 (no pain) to 10 (worst pain imaginable)
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 7 Aug 2024.
- Background: PubMed 34030173Orr NL, Wahl KJ, Lisonek M, Joannou A, Noga H, Albert A, Bedaiwy MA, Williams C, Allaire C, Yong PJ. Central sensitization inventory in endometriosis. Pain. 2022 Feb 1;163(2):e234-e245. doi: 10.1097/j.pain.0000000000002351.
- Background: PubMed 28731958McPeak AE, Allaire C, Williams C, Albert A, Lisonkova S, Yong PJ. Pain Catastrophizing and Pain Health-Related Quality-of-Life in Endometriosis. Clin J Pain. 2018 Apr;34(4):349-356. doi: 10.1097/AJP.0000000000000539.
- Background: PubMed 30954496Bao C, Noga H, Allaire C, Williams C, Bedaiwy MA, Sadownik LA, Brotto LA, Smith KB, Yong PJ. Provoked Vestibulodynia in Women with Pelvic Pain. Sex Med. 2019 Jun;7(2):227-234. doi: 10.1016/j.esxm.2019.03.002. Epub 2019 Apr 4.
- Background: PubMed 31864912Ng N, Wahl K, Orr NL, Noga H, Williams C, Allaire C, Bedaiwy MA, Yong PJ. Endometriosis and Negative Perception of the Medical Profession. J Obstet Gynaecol Can. 2020 Mar;42(3):248-255. doi: 10.1016/j.jogc.2019.08.034. Epub 2019 Dec 18.
- Background: PubMed 29935381Williams C, Long AJ, Noga H, Allaire C, Bedaiwy MA, Lisonkova S, Yong PJ. East and South East Asian Ethnicity and Moderate-to-Severe Endometriosis. J Minim Invasive Gynecol. 2019 Mar-Apr;26(3):507-515. doi: 10.1016/j.jmig.2018.06.009. Epub 2018 Jun 20.
- Background: PubMed 32176592Arion K, Orr NL, Noga H, Allaire C, Williams C, Bedaiwy MA, Yong PJ. A Quantitative Analysis of Sleep Quality in Women with Endometriosis. J Womens Health (Larchmt). 2020 Sep;29(9):1209-1215. doi: 10.1089/jwh.2019.8008. Epub 2020 Mar 13.
- Background: PubMed 33278297Geoffrion R, Yang EC, Koenig NA, Brotto LA, Barr AM, Lee T, Allaire C, Bedaiwy MA, Yong PJ. Recreational Cannabis Use Before and After Legalization in Women With Pelvic Pain. Obstet Gynecol. 2021 Jan 1;137(1):91-99. doi: 10.1097/AOG.0000000000004207.
- Background: PubMed 36848090Orr NL, Huang AJ, Liu YD, Noga H, Bedaiwy MA, Williams C, Allaire C, Yong PJ. Association of Central Sensitization Inventory Scores With Pain Outcomes After Endometriosis Surgery. JAMA Netw Open. 2023 Feb 1;6(2):e230780. doi: 10.1001/jamanetworkopen.2023.0780.
- Background: PubMed 29801714Shum LK, Bedaiwy MA, Allaire C, Williams C, Noga H, Albert A, Lisonkova S, Yong PJ. Deep Dyspareunia and Sexual Quality of Life in Women With Endometriosis. Sex Med. 2018 Sep;6(3):224-233. doi: 10.1016/j.esxm.2018.04.006. Epub 2018 May 22.
- Background: PubMed 30078464Orr NL, Noga H, Williams C, Allaire C, Bedaiwy MA, Lisonkova S, Smith KB, Yong PJ. Deep Dyspareunia in Endometriosis: Role of the Bladder and Pelvic Floor. J Sex Med. 2018 Aug;15(8):1158-1166. doi: 10.1016/j.jsxm.2018.06.007.
- Background: PubMed 37148956Tucker DR, Noga HL, Lee C, Chiu DS, Bedaiwy MA, Williams C, Allaire C, Talhouk A, Yong PJ. Pelvic pain comorbidities associated with quality of life after endometriosis surgery. Am J Obstet Gynecol. 2023 Aug;229(2):147.e1-147.e20. doi: 10.1016/j.ajog.2023.04.040. Epub 2023 May 4.
- Results publication: PubMed 27443813Yosef A, Allaire C, Williams C, Ahmed AG, Al-Hussaini T, Abdellah MS, Wong F, Lisonkova S, Yong PJ. Multifactorial contributors to the severity of chronic pelvic pain in women. Am J Obstet Gynecol. 2016 Dec;215(6):760.e1-760.e14. doi: 10.1016/j.ajog.2016.07.023. Epub 2016 Jul 18.
- Endometriosis Pelvic Pain LaboratoryLink provided by the sponsor.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Paul Yong, MD PhD FRCSC principal investigator
BC Women's Hospital & Health Centre
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Endometriosis, run by BC Women's Hospital & Health Centre at 1 site in Canada.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 1 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: enrolling by invitation, as of the sponsor's last update on 7 Aug 2024. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Canada. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Patient-reported severity of chronic pelvic pain (time frame: 3 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT02911090, which also lists 21 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 7 Aug 2024.