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Informational Q&A: Cystinosis QoL Study

We will host an informational session on the CRN funded study “Development of a patient-reported outcome to measure the...

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Recruiting for Health-Related Quality of Life Study

Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....

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Seeking Volunteers for Male Fertility in Cystinosis Study

Men 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...

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Study Participants Needed: The Effect of Exercise on Muscle Dysfunction in Cystinosis

Clinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...

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Newborn Screening: Review of its Impact for Cystinosis

Could newborn screening provide a turning point in the natural history of cystinosis? Review the latest publication “Newborn Screening: Review of...

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Participants Requested: Cystinosis & the Brain Study

Cystinosis researcher, Ana Francisco and her team at Montefiore Medical Center/Einstein College of Medicine are exploring disease impact on...

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AVROBIO Cystinosis Focus Group

AVROBIO is looking for perspectives from the cystinosis community. They will be conducting a small focus group to help...

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Joint Research Funding into the Molecular Causes of Infertility in Male Cystinosis Patients

Cystinosis Ireland and the CRN are delighted to announce  they will jointly fund research project entitled “Perturbations in the...

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Research Results: Community-led Grip Strength Study

Thanks in part to volunteers at both the 2017 and 2019 CRN Family Conferences, this study was able to...

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CRN & Cystinosis Ireland Co-Fund Male Infertility Study

We are pleased to announce a collaboration between the Cystinosis Research Network (CRN) and Cystinosis Ireland to fund a...

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