Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....
Read moreBy Cystinosis Research Network
December 14, 2022
Men 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...
Read moreBy Cystinosis Research Network
November 2, 2022
The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...
Read moreBy Cystinosis Research Network
October 20, 2022
The Neuromuscular Clinic at Massachusetts General Hospital (MGH) led by Dr. Reza Seyedsadjadi, is currently enrolling participants for a...
Read moreEmory University in Atlanta, Georgia, is actively recruiting for the Cohort 0 control groupin the CYStem clinical trial. While...
Read moreA new chapter in cystinosis research has begun. Novartis has officially opened the next phase of its CYStem Phase...
Read moreFor our families using Cystadrops, we received the following information from Recordati. This update was in response to direct...
Read moreNovartis has announced the Phase I/II CYStem clinical trial will recruit children ages 2-5 with nephropathic cystinosis. The trial...
Read moreThe CRN-funded QUALIFY-US study, also known as the Quality of Life study, is wrapping up this month. Our researchers...
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