Next Generation of Cystinosis, a cystinosis-focused patient advocacy organization, is sponsoring the research study Living with Cystinosis as an Adult: Community Insights Study. The study is designed to improve understanding of the lived experience and disease burden of adults with cystinosis, including symptoms and comorbidities, treatment experiences, interactions with the healthcare system, physical and emotional impacts, daily-life challenges, unmet needs, and desired supports.

Engage Health is fielding the research in partnership with Next Generation of Cystinosis and the study team. Participants will complete an online survey, including a validated patient-reported outcome measure, followed by an individual interview. The study is seeking 40 adults age 18 years or older who have been diagnosed with cystinosis.

The online survey is expected to take approximately 20–30 minutes, and the interview approximately 60–90 minutes. Participants who complete the interview will receive a $200 USD honorarium for their time. To begin, click here.