Cancer Moonshot Biobank

Website and portal for a long-term research study looking at how cancer changes over time.

Cancer Moonshot Biobank home page

About the Biobank

The Cancer Moonshot Biobank is a long-term research study looking at how cancer changes over time. By asking people with certain kinds of cancer to donate samples of blood and tissue and share their medical records, the study would create a biobank of information that researchers could use. By collecting new data from the same participants, the researchers could see how cancer changed and responded to treatments.


Website and Portal

The public website explains in clear, plain language what the study is and how it works. 

In addition to basic information about giving consent and donating samples, we needed to explain a particular benefit of participating — getting a biomarker report. The biomarker report looks at the genetic sequence of the cancer itself, which can be used to recommend targeted therapy. It's not data that many patients would receive otherwise, and is being provided for free.

As cancer affects different people and populations differently, the study had a particular focus on getting a diverse range of participants. As a part of that effort, they decided to offer the participant-focused experiences — the public site, as well as the participant portal — in English and Spanish.

The portal had several distinct user types, with different requirements.

  • Participants can see copies of their biomarker reports, consent forms, and manage their participation in the study, including choosing to withdraw and deciding what will be done with their data.
  • Clinical coordinators work for the study, and use the portal to enroll and manage participants.
  • Healthcare providers view the data of the participants in their care.
  • Lab technicians upload biomarker reports and associate them with participants.

Team and Role

Our small, agile team consisted of myself, a visual designer, front-end engineer, database engineer, and project manager.

As the experience designer on the project, I coordinated and collaborated with design, development, technical architecture, and strategy to create a product that is user-centered and flexible.

Some of my work included:

  • Creating process maps to connect the online and offline experience for participants and providers.
  • Establish and enacted a content strategy for the project, including an editorial style guide.
  • Plan and conduct usability testing, including cognitive interviews.
  • Create process flows, wireframes, and prototypes to illustrate new features.

workflows for reconsenting a minor

Options for process to re-consent a participant who joined the study as a minor but has turned 18.


Connecting the experience /// Joining and participating in the study occurred across in-person interactions, and several different technologies in addition to our platform. Making sure that we fully understood the full scope of interactions and expectations was occasionally a challenge, since we didn't have full visibility into what was being planned in all spaces.

Compliance and oversight /// Research studies such as this one require a great deal of oversight from inside the institute and outside. Anything that the public would interact with needed to be reviewed and approved by the Independent Review Board, and often needed explanation and justification.

Complex interactions with legal consequences /// Issues of consent come into play for every patient, and even more so when patients are underage. The study could have participants who joined as minors, and gained their majority while in the study — meaning they would have to re-consent to participate, take over management of their own health data, and we would have to remove access for parents or guardians. After a lot of discussion and the small number of participants this affected, we ended up creating a workflow that managed those changes through manual intervention, but first we had to understand all of the elements at play and how to account for them.

Cancer is hard /// When working on a product that is focused on people who are ill, there are few straight paths. We needed to make sure we were accounting for some very distinct possibilities that are hard to talk about — what happens if a person can't manage their own healthcare? What happens to their data if they die? And how do we ensure that we are not adding a burden to an already difficult situation with our product?


The website and portal are live, and after delays due to COVID-19, the study hopes to start enrolling patients by summer 2021.

In January 2021 I spoke with other members of the federal Biobank team at the  NCI Data Science Seminar Series, presenting an overview of the public site and the portal functionality.