Core outcomes for Uterine Fibroids

We're bringing together people with lived experience of uterine fibroids, the clinicians who treat them, and researchers, to agree which outcomes future fibroid research should measure. Your voice helps set the priorities.We are excited to invite you to join an international project focused on improving research on uterine fibroids.

The Round 1 survey opens October. Check back soon.

Our goal

Fibroid studies currently measure lots of different things, which makes them hard to compare.We are developing a "core outcome set": an agreed minimum list of outcomes that all future fibroid studies should report.We do this by asking patients, clinicians and researchers what matters most.

Who can take part?

- People with lived experience of uterine fibroids, and their partners or supporters
- Healthcare professionals who care for people with fibroids
- Researchers working in the uterine fibroid fieldThis is an international study: participants from any country are welcome.

What's involved?

Two short, anonymous online survey rounds (about 10-15 minutes each). You rate how important each outcome is. In Round 2, you'll see how the whole group and your stakeholder group responded in Round 1 before giving your final view. Round 2 is offered only to people who complete Round 1.

Resources

New to core outcome sets, or want the details behind this study?You can read more about uf:outcomes participant information sheet here.

Got a question?

Find answers here in our FAQ, or contact us at [email protected]

Will I be paid for taking part?

No — taking part is voluntary and unpaid.

Do I have to take part?

No. Participation is entirely voluntary and you can stop at any time.

How many survey rounds are there?

Two online rounds, each about 10-15 minutes. Round 2 is offered only to people who complete Round 1.

Do I have to complete both rounds?

We strongly encourage you to participate in all rounds of the Delphi survey, as your input matters most across both rounds. However, you are free to withdraw at any time without giving a reason. If you do withdraw, your responses up to that point will still be used, as they are valuable to the study.

Is my data anonymous?

Yes. You're given a unique identifier and your responses are not linked to you personally. Full details are in the participant information sheet.

Why doesn’t a core outcome set for uterine fibroids already exist?

A core outcome set (COS) for uterine fibroids has historically been missing because clinical studies use wide-ranging, inconsistent endpoints. Researchers track different primary and secondary measures, historical trials lack patient input, and diverse medical, surgical, and radiological treatments complicate consensus. Work is currently underway via groups like the COMET Initiative to establish standardised standards.

Meet the uf:outcomes team: steering group

Steering committee
NameRoleCountry
Ally MurjiHealthcare Professional, researcherCanada
Alison AmoahHealthcare Professional, researcherUK
Archi VasireddyHealthcare Professional, researcherUK
Audrey SkervinPatient AdvocateUK
Ayman Al-HendyHealthcare Professional, researcherUSA
Dawn HeelsPatient AdvocateUK
Edward MullinsHealthcare Professional, researcherUK
Elizabeth StewartHealthcare Professional, researcherUSA
Erica MarshHealthcare Professional, researcherUSA
Hugh ByrneHealthcare Professional, researcherUK
Jack TehHealthcare ProfessionalUK
James SpiesHealthcare Professional, researcherUSA
Jessica SimpsonHealthcare ProfessionalUK
Jimi OdejinmiHealthcare Professional, researcherUK
Krupa MadhvaniHealthcare Professional, researcherUK
Lauren WiseHealthcare Professional, researcherUSA
Malcolm MunroHealthcare Professional, researcherUSA
Mary Ann LumsdenHealthcare Professional, researcherUK
Melody TaheriHealthcare Professional, researcherUK
Mez Aref-AdibHealthcare Professional, researcherUK
Simone FerreroHealthcare Professional, researcherItaly
Simrit NijjarHealthcare Professional, researcherUK
Sony (Sukhbir) SinghHealthcare Professional, researcherCanada
Tina TellumHealthcare Professional, researcherNorway

An international collaborative study led by Dr Alison Amoah and Dr Edward Mullins.
Approved by Imperial College London Research Governance and Integrity team (reference number: 8284826).

Contact

Please feel free to contact the uf:outcomes study team:Study lead and day-to-day coordination: Dr Alison Amoah, Locum Consultant in Obstetrics and Gynaecology; [email protected]Principal Investigator: Dr Edward Mullins; Clinical Associate Professor, Department of Metabolism, Digestion and Reproduction; [email protected]Study email address: [email protected]

Support

Some questions may touch on sensitive topics. If you'd like support, British Fibroid Trust can help: http://www.britishfibroidtrust.org.uk/

Privacy

This website gives information about the uf:outcomes study and does not itself collect any personal data. If you choose to take part, the survey is hosted on Qualtrics (EU servers) and run by Dr Edward Mullins under research ethics approval (ICREC Reference number: 8284826). Your responses are handled as set out in the participant information and privacy notice shown before you begin. This website does not use cookies or track visitors.

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Website designed and built by Jack Teh.