They can compare their answers against those of other families, which, she says, makes them feel less isolated.
Paul would also like to develop a feature that enables patients to send their medical records to their healthcare provider, eliminating the need for them to reiterate their medical history to every clinician they meet.
Improving short-term and long-term quality of life
Some research efforts may not affect patients until many years after the individual research project ends, such as projects that study the role of genetics in autism. However, other projects, such as one that focuses on how much people pay for applied behavioral therapy, can influence policymakers to change laws and require insurance companies to provide coverage.
"We're engaged in a very broad spectrum of activities— some of which give immediate benefit and some of which give more long-term benefits," Paul says.