Shaping the future of autism research

The mission of SPARK — an online research partnership involving 50,000 individuals with autism and their families — is simple: to speed up research and advance understanding of autism.

The Challenge

To build a behind the scenes decision matrix that would provide a variety of users the ability to register themselves or dependents as needed into the project depending on the unique makeup of their family and those on the spectrum.  Oh, and don’t confuse the user.

The Solution

Figure out all of the possible family structures (i.e. biological mom with adopted children and a step dad with affected siblings), identify each of the personas involved, exhaust every possibility for registration and build a solution for each.

The Results

The registration process met amazingly strict assent and consent regulations while making the user experience relatively painless.

Routing the user down the right path.

Partnering with the appropriate stakeholders was absolutely crucial to the success of this project. Hands down, the biggest challenge was figuring out how to route a variety of different parents (biological, adoptive, step, etc.) through a process which resulted in having the right mix of children and parents registered based on the needs of the scientists. The ideal mix is a trio which is made up of the biological mother, father and affected offspring. Sometimes the person with ASD is a child, sometimes they’re the parent. Sometimes it’s an isolated case of ASD in the family, other times the family tree is much more complex. This registration account for all the possible combinations while providing the project with no more and no less than the right amount of information per registrant as is needed.

One registered the user needed a way to follow-up on their registration as well as where they stood in the project. We built a dashboard that became accessible at the end of the registration process to solve just that problem. Here the participants can view project news as well as receive personalized updates. They are also encouraged to participate in surveys and questionnaires that will help add some dimension to the results of the study.

The Results.

A clean and intuitive registration funnel that makes it simple for the users to participate while gathering the right amount of data for the project. This paired along with an easy-to-use dashboard should provide both the Simons Foundation and the participants a sandbox in which to communicate and collaborate.