An observational longitudinal study of young people aged 10 to 18-years in Australia that tracks young people’s development and trajectories of period and pelvic pain, and endometriosis with current gynaecological care to determine factors associated with pain, quality of life, mental health and health utilisation.

Murdoch Children's Research Institute0 个研究点目标入组 3,500 人开始时间: 2022年3月1日最近更新: 2024年4月8日

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•Each young person must meet all the following criteria to be enrolled in the LongSTEPPP study:
•Is between the ages of 10 and 18-years at enrolment
•Has seen a GP or has a referral to:
•an endometriosis and pelvic pain GP clinic (EPPC)
•a gynaecologist or paediatrician
•for dysmenorrhoea, period, or pelvic pain, or suspected or proven endometriosis from another health clinician.
•Can read and understand English, with proficiency enough to understand the Participant Information Statements, make an informed decision about completing the questionnaires and has the ability to complete the questionnaires; and
•The young person and parent/guardian provide informed consent, or the young person demonstrates maturity and capacity to consent and provides informed consent (as a mature minor).
•We will also be recruiting female parents/guardians of enrolled young people who must meet all the following criteria to be enrolled in the LongSTEPPP study:
•Can read and understand English, with proficiency enough to understand the Participant Information Statements, make an informed decision about completing the questionnaires and ability to complete the questionnaires; and
•Demonstrates maturity and capacity to consent and provides informed consent.

•Participants meeting any of the following criteria will be excluded from LongSTEPPP:
•Absent uterus (Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome or Androgen Insensitivity Syndrome
•Referral to a gynaecologist for oncofertility/fertility preservation
•Intellectual disability or global developmental delay.

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