PostedMarch 4, 2019
by Kristina Cotter, PhD, CGC
A research consent is designed to protect patients from participating in research they don’t understand or agree to. In our research consent, we describe what AllStripes Research is and tell you about any associated benefits or risks. We set up our research this way because we think it’s important to get your permission before we do any research using your information.
Why are you asking me to sign a research consent?
If you want to drive forward drug development in your condition and participate in research, it is important that you first read and agree to the consent. Without your consent, your de-identified information cannot be used to help design a clinical trial, advance future research studies, or qualify you into a clinical trial. Remember, it’s your choice whether or not to participate and you can decide to stop participating at any time. You can also sign a consent on behalf of your children or adults who aren’t able to consent for themselves.
Who reviewed this research consent?
Any company, hospital, or researcher doing biomedical research must have an independent IRB (Institutional Review Board) review and approve of their research consent and plan. An IRB is an independent research ethics organization that makes sure that researchers protect the safety, privacy, and security of anyone who participates. Our IRB is called Western IRB and they oversee research studies across the world. Western IRB reviewed our research consent, research plans, and all associated materials, and they determined that it is ethical, private, secure, and safe.
Why is it important to be informed?
Researchers often go straight to hospitals and insurance companies to access patient information and use it in research. This is possible because consent forms at the doctor’s office or insurance companies often contain a section on research. When patients sign these forms, it allows hospitals and insurance companies to use their de-identified medical information in future research projects.
We started AllStripes because we want to empower patients to help accelerate treatments in rare disease. This way patients can volunteer to privately contribute their information to research and be kept in the loop about the impact that they are making along the way!
If you have further questions, please visit our FAQ.