F.A.Q.
Have a question?
Search our FAQ for answers to anything you might ask.
What happened to the tumor, tissue, blood, or other biosamples you donated?
This morning, we extended an invitation to our project, and we are blown away by the response! We are so excited to have hundreds of you join us on this journey, and we’re working hard to get you on to the app so you can learn about your samples.
Who are you people?
We’re researchers at UPMC and Johns Hopkins who believe that you have a right to know about what happens to biosamples that you’ve donated for research. We’ve built an app to give you that information, and we’d like to share it with you! You can learn more about our team here.
Why was I invited?
If you got the invitation by email thanking you for your donation, we believe it’s because at some point in the past, you signed a form to agree to donate samples to UPMC’s Breast Disease Research Repository. You may have signed this form during a doctor’s appointment, before a surgery, or after a surgery. You may not remember signing it! That’s okay! We get it—you’ve probably signed a lot of forms, and it’s especially hard to keep track of these things if you’re sick.
I’ve signed up. What happens next?
First, we’re excited to have you on board! Once you’ve completed the consent form (linked in the invitation), we will verify your eligibility. If you’re eligible, then we will invite you to join the app where you can learn about biosamples that you may have donated for research.
If you’re not eligible yet, that’s okay—we will put you on our waitlist. We are working to add more biobanks to the app, and you may have samples there! We’ll keep you updated on our progress.
If you more questions, please reach out to us via email, or you can attend our live Q&A session on February 22 nd at 2:00 pm on Zoom. Register here.
How do I use this app?
We hope you learn a lot and find meaningful information in the app. Please see our User Manual to help guide you through each of the screens and features. If you still have questions, please reach out.
What is De-Identification, and why can it be problematic?
De-Identification is the process of removing personally identifiable information about patients when their samples are donated for research. While we expect current de-identification of data to protect patients, it ultimately de-personalizes patients' contributions to the biobank, removing their name and their ability to learn about or benefit from the research on their tissues.
1. Patients are disconnected from any insights discovered using their samples (Any genetic mutations that are found, like BRCA, are hidden)
2. Researchers don't know who they're studying. Scientists could be studying samples of 2 sisters and not even know it.
3. Doctors are not aware of research results, even if it may be clinically relevant to their patient's treatment.
What is Precision Medicine, and why is it important?
Precision Medicine uses information about a person's own genes or proteins to prevent, diagnose, or treat disease.
A practical application of this, as it relates to donated tissues, is the use of targeted therapies to treat specific types of cancer cells.
Now more than ever, research findings are more relevant, and could provide immediate benefits to the person who donated them and their family members. Unfortunately there was always a disconnect that prevented researches from sharing these insights directly...UNTIL NOW
What happens to my donated samples?
Will my health insurance company be able to see my information?
No. The people who can see this data are:
1. The researchers who are using it in their experiments;
2. Our research team, who is collecting it and giving it back to you;
and
3. You!
Occasionally, research projects are audited by the Office of Research Protections. If this happens, the auditor will also gain access to your information.
Will I be able to see my test results and other health records?
For now, no. The data you see in the app is the data “package” that was taken from your medical records and given to researchers for their experiments. This data may include some health-related information (like diagnosis), but this is separate from your official medical records.
Can I do this if I had care outside of UPMC?
Everyone is welcome to sign up. For the moment, we only have authorization to search for samples within the UPMC Breast Disease Research Repository. If you do not have samples there, you can sign up for our waitlist. We hope to add more biobanks soon, at UPMC and beyond!
Can I participate if I had care a very long time ago?
Yes! No matter when you were a patient, we can check for any records of your samples. The Breast Disease Research Repository at UPMC has records going back to its beginning in 2004. We hope to add more biobanks in the future, and they may be even older!
Do we also need to sign a different consent form to use this app?
Just like most apps, there are Terms & Conditions that you agree to when you start using our app.
When you first sign up for app, we will also ask if you’d like to take a survey. We will give you information about the survey, and if you agree to take it, you’ll need to e-sign a consent form.
The survey is OPTIONAL You can use the app without taking the survey.
What if I share information and then change my mind about participating?
If you change your mind, please let us know via the contact form We can remove you from our study, but we may not be able to remove your information from other studies that are using your biosample data. If you reach out, we will try to help.