The NECST Registry Working Groups are a group of volunteer clinical and scientific experts formed to provide specific guidance on the development of the NECST Registry modules and minimum core dataset related to endometriosis.
| 1. Demographics and consent |
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| 2. Clinical presentation and medical history |
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| 3. Patient reported outcome measures (PROMs) |
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| 4. Imaging (ultrasound and MRI) |
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| 5. Medical management |
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| 6. Surgical management |
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| 7. Histopathology and biobanking |
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Each of these modules will contribute to the overall dataset in the NECST Registry however, not all modules will be completed for each participant, since not all participants will require all interventions.
In defining the essential data items, we have referred to the World Endometriosis Research Foundation (WERF), EPHect Project that has SOPs and standardisation for data collection for endometriosis research.
