What's the purpose of this study?
The purpose of this research study is to develop an app for patients to track and learn about biosamples they’ve donated for research. We hope to learn about what patients want to know about research on their tumors/tissues, blood, and other biosamples. We are also looking at when and how patients would like to be updated about how their biospecimens are being used in research.
Why was I invited?
If you received a personalized invitation to participate in this study, it’s because you consented to donate your biosamples to one of our collaborating research programs.
Usually, patients sign up to donate biosamples before a surgery or during a doctor’s appointment.
Many people don't remember if they've signed up to donate their biosamples, and that’s okay! If you consent to our study (Decentralized Biobanking "de-bi": An App for Patient Feedback from Biobank Research Donation), a member of our research team will check your enrollment status for you.
I’ve signed up. What happens next?
We’re excited to have you on board! Once you’ve completed the consent form, we will send you a link to join our platform (app or web application, depending on which research program you are participating in).
The next step is to log into our platform and explore what's available, while our team works on connecting you with relevant research information.
What if the study that I donated biosamples to is not participating in the de-bi study?
You can also sign up for the de-bi study even if you are not participating in other biosample research studies, or if the biosample research studies that you participate in are not yet collaborating with our team. We welcome feedback and collaboration from anyone interested in helping us advance our patient friendly biobanking platform.
When can I sign up? Does it matter if my surgery already happened?
If you are signing up for a participating biosample collection study, you may be able to sign up to the de-bi study at the same time. You may also have the opportunity to sign up for the de-bi study sometime after your surgery, whether that be weeks, months, or even years later.
What if I sign up for the de-bi study then change my mind later?
To withdraw from the de-bi study, please reach out to us through the contact form, or via the emails provided in the consent form when you joined our study(We emailed you a copy when you signed up).
Withdrawing from the de-bi study does not affect your participation in any related biosample research studies.
Using the Mobile App
How do I download this app?
You will receive email instructions. Feel free to reply to that email for questions or onboarding assistance.
How does the de-bi study relate to the other studies to which I've donated my samples?
The de-bi study is doing research and development on technology to enable patients to learn about research on their donated biosamples. Our work seeks to build a platform that is compatible with all other biosample research projects.
We collaborate with research studies that collect biosamples. Our goal is to empower the scientists and donors within those studies to unlock more value and recognition within their existing research activies.
Data & Privacy
Will my health insurance company be able to see information about research participation if I join the de-bi study?
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;
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?
No, the information that you will be able to see in our study is limited to details regarding your participation in certain research projects which you may have donated your biosamples.
Our system is not connected to the Electronic Medical Record systems, and it is for research only.
What is De-Identification, and how does it affect research?
De-Identification is the process of removing personally identifiable information about patients when their samples are donated for research. This enables researchers to access your samples without learning your identity.
While it may be good for privacy, it has some drawbacks.
For example, patients can't find out what happens, and researchers can't share results that might be relevant with patients or their doctors.
Find out more about this here.
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.
Realizing precision medicine as the standard-of-care requires direct, seamless translation of learning from an individual’s body into their treatment.