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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.

Enrolling by invitation

Enrolling by invitation. The study team selects and invites participants, usually from an existing group of patients.

Sites and contacts
Official record
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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

Other trials in Canada

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.

  1. 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.

  1. First posted22 Sep 2016 (estimated)
  2. Study startJun 2016
  3. Primary completionDec 2028 (estimated)
  4. Study completionDec 2028 (estimated)

Resources

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
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 34030173
  • McPeak 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 28731958
  • Bao 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 30954496
  • Ng 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 31864912
  • Williams 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 29935381
  • Arion 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 32176592
  • Geoffrion 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 33278297
  • Orr 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 36848090
  • Shum 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 29801714
  • Orr 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 30078464
  • Tucker 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 37148956
  • Yosef 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 27443813
  • Yong 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 30446474
  • Allaire 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 29031895
  • Rojas 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

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.

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