Who is eligible to join the Living Lab?

US residents aged 18 or older (19 in Nebraska) with a diagnosis of ovarian, fallopian tube, peritoneal, endometrial, or uterine cancer, including recognized subtypes and sarcomas.

Is there any cost to participate?

No. Living Lab membership is free. Participation does not affect health insurance, and data is encrypted and de-identified before being shared with approved researchers.

Can I withdraw from the registry?

Yes. You can withdraw from the Living Lab at any time through your MyDataHelps account. Previously contributed de-identified data may remain in aggregated analyses per the informed consent.

What data does the Living Lab collect?

The registry collects patient-reported outcomes, quality-of-life measures, treatment experiences, financial impact, and, with consent, de-identified electronic health record data.

Independent bioethicists, community representatives and researchers review all research proposals to make sure they meet ethical standards.

Cybersecurity experts work with us to ensure data is protected and respond quickly to any threats.

Governance and Ethics

Our Commitment to You

We understand the trust you place in us, and we are committed to upholding the highest standards of privacy, transparency, and ethical conduct.

We have established robust safeguards not only to meet legal requirements, but as fundamental promises to our community.

Standards and Accountability

Community Engagement Committee

Governance Committee

Security Alliance

Our Promise to You

Quick responses to any questions you may have.

Public celebration of every breakthrough achieved.

What We Ask from Researchers

Clear evidence that research will accelerate patient benefit

Commitment to sharing results immediately with our community

Institutional ethics approval that matches our standards

Concrete plans for translating discoveries into improved care