Building a shared database of rare disease patient information

FLOWER is a research study that collects medical information from patients with rare diseases — including medical records, imaging scans, lab results, and patient surveys — in one centralized database. Instead of asking you to fill out lots of paperwork, the study team pulls information directly from your medical providers and asks you to complete occasional surveys about your health. The goal is to gather detailed, real-world information about rare diseases in a way that doesn't burden patients or doctors.

Understanding rare diseases is difficult because so few people have them, making it hard for researchers to learn about how these conditions develop and progress. Traditional rare disease studies rely heavily on patients to fill out surveys and reports, which is time-consuming and stressful. This study solves that problem by collecting information automatically from medical records and healthcare providers, so researchers can understand rare diseases better without exhausting limited medical resources.