Your information is powerful
With your help, and while still maintaining your privacy, Backpack Health collects de-identified, actionable data to uncover important insights.
When you contribute your data to research, your story positively impacts not just you and your loved ones, but others who are on similar journeys. Your information helps researchers answer challenging and even unanticipated questions, and by participating, your data can help investigators generate and test ideas around pathways to diagnosis, interactions with healthcare systems, phenotype-genotype relationships, and many other topics. Put your info to work for you, your loved ones, and others.
Your data can have a global impact
We make it easy to participate in research, wherever you are in the world.
We believe in maximizing data sharing and collaboration. You can easily contribute your info to multiple, ongoing research efforts — from a foundation’s patient registry to clinical trials.
Backpack’s Smart Surveys add your responses to your Backpack allowing you to make use of that health information and even reuse it so you can participate in more research studies (with less work on your part). You don’t even need to speak English to contribute your data. Backpack Health is available in 5 different languages (with more to come), so you can be part of a global research effort.
Informed consent: adding purpose and protection for your data
We want to elevate the usability and meaningfulness of your data while always protecting your rights as a research participant.
To give your data even more power and allow it to be used in academic research, Backpack will take you through a simple informed consent process. Informed consent ensures that you fully understand the impact of research on yourself and your rights as a study participant. Taking part in research is always optional and you can still use Backpack without participating in any research registry.
Participating in research never means sacrificing privacy and security. If you choose to participate, your information (de-identified, so no one can link it back to you or your loved ones) is collected and stored. Backpack makes this data available to academic researchers at no charge, to help investigators publish and share findings with the scientific community. This entire process is overseen by an Institutional Review Board (IRB), to ensure all research is conducted ethically and responsibly.