Frequently Asked Questions
Patient FAQ
If your question is not here, please reach out—our team is always happy to help.
Email LivingLab@ocrahope.org.
Participation Details
Ovarian and/or uterine cancer patients who are 18 years of age or older and living within the United States.
Yes! Survivorship data is just as important as information from those currently in treatment.
Most people complete the process in under 20 minutes.
You will be asked to review and sign a consent form that explains the participation details. You will be asked to sign a medical records release form. You will also decide whether to allow the Community Accelerated Research Exchange to access your electronic medical records (EMR) or health app data. Additionally, you will be asked to complete several short surveys about your health and personal cancer experience. All information you provide is kept strictly confidential. After joining, you will be invited to complete annual surveys about your health.
No samples are required for Living Lab members. If future studies invite sample donation, you'll be contacted separately and can choose whether you wish to take part.
Who is eligible to enroll?
Ovarian and/or uterine cancer patients who are 18 years of age or older and living within the United States.
Can I join if I'm in remission or finished with treatment?
Yes! Survivorship data is just as important as information from those currently in treatment.
How long does it take to enroll?
Most people complete the process in under 20 minutes.
What am I expected to do as a member?
You will be asked to review and sign a consent form that explains the participation details. You will be asked to sign a medical records release form. You will also decide whether to allow the Community Accelerated Research Exchange to access your electronic medical records (EMR) or health app data. Additionally, you will be asked to complete several short surveys about your health and personal cancer experience. All information you provide is kept strictly confidential. After joining, you will be invited to complete annual surveys about your health.
Do I need to provide blood or other samples?
No samples are required for Living Lab members. If future studies invite sample donation, you'll be contacted separately and can choose whether you wish to take part.
Withdrawing or Leaving the Community Accelerated Research Exchange
Absolutely. Participation is always your choice. Simply contact our support team at LivingLab@ocrahope.org.
If you withdraw, we will not collect any new information, but the data you already shared will still be used for the research described in this consent form.
Can I leave the registry after enrolling?
Absolutely. Participation is always your choice. Simply contact our support team at LivingLab@ocrahope.org.
What happens to my data if I withdraw?
If you withdraw, we will not collect any new information, but the data you already shared will still be used for the research described in this consent form.
Impact on Care, Insurance, & Costs
No. Membership in the Living Lab will not affect your coverage, premiums, or future insurability. Federal laws protect participants against genetic discrimination.
No. The Living Lab does not interfere with your relationship with your care team. We do not make medical decisions or change your treatment plan in any way.
Membership in the Living Lab is completely free. Research using data from the Living Lab may lead to new tests, drugs, or devices with commercial value. You will not receive any payment for any product developed from research using your data.
Will participating affect my current or future health insurance?
No. Membership in the Living Lab will not affect your coverage, premiums, or future insurability. Federal laws protect participants against genetic discrimination.
Will the Living Lab contact my doctors, or change my care?
No. The Living Lab does not interfere with your relationship with your care team. We do not make medical decisions or change your treatment plan in any way.
Is there a cost to join? Will I be paid?
Membership in the Living Lab is completely free. Research using data from the Living Lab may lead to new tests, drugs, or devices with commercial value. You will not receive any payment for any product developed from research using your data.
Privacy, Confidentiality & Data Use
The Living Lab places the highest priority on your confidentiality. All data is encrypted so only authorized people can read it. We also de-identify the data we share with approved research partners by removing your name and personal details.
Access is limited to approved research partners. Researchers must apply for access to the Living Lab Governance Committee. Your identifiable data is never sold, shared outside the Research Exchange, or used for non-research purposes.
Your information will be combined anonymously with others to answer important research questions aimed at improving cancer care. Results are reported broadly, never in ways that could identify you personally.
How is my data protected?
The Living Lab places the highest priority on your confidentiality. All data is encrypted so only authorized people can read it. We also de-identify the data we share with approved research partners by removing your name and personal details.
Who can access my information?
Access is limited to approved research partners. Researchers must apply for access to the Living Lab Governance Committee. Your identifiable data is never sold, shared outside the Research Exchange, or used for non-research purposes.
How will my data be used?
Your information will be combined anonymously with others to answer important research questions aimed at improving cancer care. Results are reported broadly, never in ways that could identify you personally.
Receiving Results & Research Updates
Most research results are shared at the group level—not individual medical reports—but you'll always receive newsletters about studies, community news, and major findings made possible by your involvement.
You'll be invited to subscribe to research updates, patient resources, and registry newsletters. We'll also share impact stories and major scientific milestones with our community.
Will I get personal health results from participating?
Most research results are shared at the group level—not individual medical reports—but you'll always receive newsletters about studies, community news, and major findings made possible by your involvement.
How can I stay informed about Living Lab activities?
You'll be invited to subscribe to research updates, patient resources, and registry newsletters. We'll also share impact stories and major scientific milestones with our community.
Sharing & Accessing Results
You may request to review your own data in the Living Lab at any time. Group study results will be highlighted on our website.
Not directly; however, we encourage you to share study highlights and resources with your healthcare team.
Can I access my own data or study results?
You may request to review your own data in the Living Lab at any time. Group study results will be highlighted on our website.
Can my doctor or care team receive my Living Lab information?
Not directly; however, we encourage you to share study highlights and resources with your healthcare team.
Get in Touch
If you do not see your question here, please contact us directly. We are always here to help.
Email LivingLab@ocrahope.org.
What if I have other questions or need extra help?
If you do not see your question here, please contact us directly. We are always here to help.
Email LivingLab@ocrahope.org.