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The NECST Registry collects and securely stores data to monitor the health, service utilisation, medication use, surgery and patient-reported outcomes of those receiving care for their endometriosis and/or endometriosis-related symptoms. The NECST Registry aims to provide data on the whole picture, across the life course, of the care pathway and burden of disease, for those living with endometriosis and its symptoms.

If you have been invited to participate by your gynaecologist, please carefully read the Participant Information Sheet (available to download below) and then complete the consent and patient questionnaires online by clicking on the Participate in the NECST Registry button at the top of this page.

Currently, only eligible patients will be invited to participate by their gynaecologist who have registered to be a NECST member and recruiting site for the NECST Registry. We hope to open invitation for participation to the wider population in the future.

If your gynaecologist is interested in being a data collection site and contributing data to the NECST Registry, get them to register their interest by emailing us at [email protected].

Participant Information Sheet

What to do with completed forms:

  1. Complete online (Consent form only)
    Click on the Participate in the NECST Registry button at the top of this page and follow the instructions.
  2. In person (either consent or withdrawal form)
    Take your completed form to your treating gynaecologist
  3. Email (either consent or withdrawal form)
    Email us your completed form(s) to [email protected]

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Endometriosis resources

Browse endometriosis fact sheet and booklet resources on the Jean Hailes website.

Explore resources