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Patient Registry Participation Agreement

Last Updated: August 2026

Welcome

Thank you for joining the Global Endometriosis Movement (GEM) Patient Registry.

By participating, you are helping build a stronger global understanding of endometriosis and contributing to future education, advocacy, research, and improvements in patient care around the world.

Participation is entirely voluntary.

1. Purpose of the Registry

The GEM Patient Registry is designed to:

  • Better understand the experiences of people living with endometriosis.
  • Improve patient education and awareness.
  • Support scientific research and future research collaborations.
  • Strengthen global advocacy efforts.
  • Help identify unmet patient needs.
  • Improve access to expert care and future patient support initiatives.

The Registry is not intended to replace medical care or consultation with qualified healthcare professionals.

2. Voluntary Participation

Participation in the GEM Patient Registry is entirely voluntary.

You may choose whether to participate and what information you wish to provide.

You may also request to withdraw from the Registry at any time, subject to applicable legal, research, or record-retention requirements.

3. Information You May Choose to Provide

Depending on the available features of the GEM Patient Registry, you may choose to provide information including, but not limited to:

  • Name or preferred name
  • Email address
  • Country or region
  • Demographic information
  • Age group
  • Diagnosis status
  • Symptoms and medical history
  • Previous treatments or surgeries
  • Health questionnaires
  • Medical records
  • Imaging reports (including ultrasound, MRI, CT, or other diagnostic studies)
  • Laboratory or pathology reports
  • Surgical history
  • Photographs, videos, or other supporting medical information
  • Follow-up information
  • Other information voluntarily submitted by you in support of education, research, advocacy, or future patient care initiatives.

You are always free to choose what information you wish to provide, unless specific information is required for a particular service or program.

4. How Your Information May Be Used

Information collected through the Registry may be used to:

  • Improve patient education.
  • Improve public awareness of endometriosis.
  • Better understand patient experiences.
  • Support advocacy initiatives.
  • Support scientific and clinical research.
  • Generate anonymous statistical reports.
  • Improve future patient services and educational resources.
  • Facilitate future collaboration between patients, researchers, healthcare professionals, and participating institutions.

Whenever reasonably possible, information used for research or reporting will be de-identified or presented in an aggregated form.

5. Privacy and Data Protection

Your personal information will be collected, stored, and handled in accordance with the GEM Privacy Policy.

GEM is committed to protecting your personal information and will not sell your personal data.

Reasonable administrative, technical, and organizational safeguards will be used to help protect the information you choose to share.

6. Future Contact

If you voluntarily provide your contact information, GEM may contact you regarding:

  • Registry updates
  • Educational resources
  • Research opportunities
  • Community initiatives
  • Surveys
  • Future programs or services that may be relevant to your participation

You may unsubscribe from non-essential communications at any time.

7. Withdrawal

You may request removal from the GEM Patient Registry at any time by contacting GEM.

Where permitted by applicable law and where practical, GEM will make reasonable efforts to remove your identifiable information from future Registry activities.

Information that has already been anonymized or incorporated into completed research or statistical analyses may not be removable.

8. Changes to this Agreement

As the GEM Patient Registry continues to evolve, this Participation Agreement may be updated from time to time.

The most current version will always be available on the GEM website.

Contact

If you have any questions regarding the GEM Patient Registry or this Participation Agreement, please contact us through the Contact page on the GEM website.