Establishment of the National Endometriosis Clinical and Scientific Trials (NECST) Registry to study the life course and impact on quality of life of people living with endometriosis.

Not Applicable

Recruiting

• Conditions: Endometriosis; Adenomyosis; Benign gynaecology; Chronic pelvic pain; Abnormal uterine bleeding; Fertility; Persistent pelvic pain; Reproductive Health and Childbirth - Other reproductive health and childbirth disorders; Reproductive Health and Childbirth - Menstruation and menopause; Reproductive Health and Childbirth - Fertility including in vitro fertilisation

• Registration Number: ACTRN12622000987763
• Lead Sponsor: SW

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2022-07-13
• Last Update Posted: 29 July 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: Female
• Target Recruitment: 2500

Inclusion Criteria

• Have had surgery which has confirmed that you have endometriosis or adenomyosis
• Have any of the below symptoms that might be caused by endometriosis:
- persistent pelvic pains
- problems with falling pregnant
- excessive menstrual bleeding or bleeding between periods
- heavy periods
- pain when urinating
- pain with bowel motions/passing stools
- pain with sex
• Speak English

Exclusion Criteria

• Women unable to provide informed consent;
• Females aged under 18 years of age;
• Women who are not resident in Australia or planning to not reside in Australia for the foreseeable future;
• Women with insufficient English language ability to give informed consent and complete the baseline survey instruments (at this stage consent materials and survey modules are only available in English).

Study & Design

• Study Type: Observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Overall quality of life assessed using the EQ-5D questionnaire.[ At the time of enrolment, 6 months, 12 months and then annually]; Overall quality of life assessed using the EHP-30 questionnaire. [ At the time of enrolment, 6 months, 12 months and then annually];Incidence of other conditions including adenomyosis or symptoms-related to endometriosis assessed by the clinician or completion of our Clinical Presentation and Medical History - Follow up questionnaire[ At 6 months, 12 months and then annually]