The NECST Registry

To gather information over time to understand the causes of endometriosis and improve care and quality of life for people living with endometriosis (including adenomyosis).

The NECST Registry is run by researchers across Australia. It is coordinated by Jean Hailes for Women’s Health and funded by the Australian Government’s Medical Research Future Fund (MRFF).

You are invited to join the NECST Registry if you:

• Are aged 18 or over
• Have had surgery which has confirmed that you have endometriosis or adenomyosis or 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.

If you agree to join the registry, you will be asked to sign the online Participant Consent Form and proceed to our surveys. These surveys take about 45 minutes to complete and asks questions about:

1. You, including your name, date of birth, Medicare number, place of birth, address, contact details, education and employment
2. Your medical history and your signs and symptoms
3. Your overall health and how it impacts your quality of life
4. How endometriosis impacts your quality of life.

Six and 12 months after the first survey and then every year for as long as you are willing to continue, we will send you links to follow-up surveys. They take about 20 minutes to complete and ask questions about:

1. Your signs and symptoms and endometriosis treatment and if they have changed
2. Your overall health and how it impacts your quality of life
3. How endometriosis impacts your quality of life.

Note: You don’t have to complete all the survey questions at one time. You will be able to save your answers and come back to finish the survey (you will receive an email with a link to return to the survey).

For your registration surveys, the time it will take to complete:

1. Basic details and permission (consent): 5 – 10 mins
   * Your Medicare number will be required for this survey
2. Medical history: 20 – 30 mins
   
3. Overall quality of life survey, the EQ-5D: 3 – 5 mins
4. Endometriosis quality of life survey, the EHP-30: 5 – 10 mins
   * Note: those with a diagnosis of endometriosis will receive the EHP-30 survey to complete

For the ongoing surveys (sent at 6, 12 months and annually), the time it will take to complete:

1. Follow up of any changes to your symptoms: 5 – 10 mins
2. Overall quality of life survey, the EQ-5D: 3 – 5 mins
3. Endometriosis quality of life survey, the EHP-30: 5 – 10 mins

Note:

• The times provided above are only an indication and can vary.
• You will receive an email for each survey with a link (specific to you) to complete the survey.
• You do not have to complete the surveys all at one time. You will be able to save your answers and come back to finish the survey (an email with a link to return to the survey will be sent to you).

If you agree to join the registry we will also ask your permission (consent) for the doctor who cares for you (if she or he is part of the NECST Registry), to add clinical information about your endometriosis to the registry.

If you agree the hospital and research staff will record results and clinical data on the following:

• Your diagnosis
• Imaging results, ultrasound and/or magnetic resonance imaging (MRI) to detect endometriosis
• Your care plan and any medicines you take to help control your symptoms
• Details of any surgery you have to diagnose or remove endometriosis
• Pathology reports from tissue removed during surgery.

Linking to other databases

We will also ask your permission (consent) to link your information to existing databases including:

1. Hospital admissions
2. Emergency department admissions
3. The Medicare Benefits Schedule (MBS) where health care services that the Australian Government makes a contribution to are recorded
4. The Pharmaceutical Benefit Scheme (PBS) where prescription medications are recorded
5. Registry of births, deaths and marriages
6. Health registries relevant to endometriosis (for example the Australia and New Zealand Assisted Reproduction Database).

If you agree to take part in the NECST Registry, you can withdraw at any time without giving a reason. This will not affect any of the care you receive.

• Your involvement will help doctors and researchers understand more about endometriosis, it’s possible causes and how it’s best managed.
• You will have a copy of your medical information that you can take to any future visits to healthcare providers for your endometriosis.

• The main disadvantage is the inconvenience and time it takes to complete the surveys.
• Some questions in the survey might be distressing. If you become upset or uncomfortable at any time, you can end the survey.
• If you need it, the registry team can arrange counselling or other support, or you can discuss your feelings with someone at Lifeline (phone 13 11 14), Beyond Blue (phone 1300 22 4636) or 1800 Respect (1800 737 732).

All information collected from (or about) you will be kept confidential and any personal information you provide will be managed in accordance with data protection legislation and all relevant country and state specific privacy legislation.

Your information will be kept secure by VCS Foundation Ltd, who manage the secure data platform that hosts the NECST Registry.

Only the research and clinical care team (including research assistants and the data management team) will have access to your information, unless:

• You have given permission (consent) otherwise; or
• We are required by law to release information to comply with regulatory obligations.

Summaries of the information collected will be presented at local, national and international scientific conferences and published in an academic scientific journal. Individual participants will not be identified in any reports arising from the NECST Registry.

If you have any complaints about the study or any of the study team, you have the right to make a complaint. This will not affect the care or treatment that you are receiving. To make a complaint please contact:

Monash Health Human Research Ethics Committee

Contact person: Ms Deborah Dell

Position: HREC Executive Officer

Telephone: 03 9594 4611

Email: [email protected]

Quote protocol number: HREC/62508

To join the registry and help clinicians and researchers understand endometriosis better, please click here to sign the consent and access the first survey (please also have your Medicare number with you).