Dear CRF Families and Adults with Cystinosis,
We are excited to let you know that our CRF funded study “Clinical Trial Readiness for Distal Myopathy in Nephropathic Cystinosis” has resulted in a clinical trial! The title of the clinical trial is “Distal Myopathy and Muscle Wasting in Nephropathic Cystinosis”. The clinical trial is open to all adults with cystinosis 18 years or older. This study will help us learn more about how cystinosis progresses and how it varies within the cystinosis population. We hope that you will want to volunteer and be part of the study. Clink here for the PDF with more information. Please contact Rachel Duong via phone at (617) 724-1330 or by email at email@example.com.
The following studies are being funded by the CRF to advance knowledge in key areas of cystinosis treatment. Click the following links to see the full information for each study.
Volunteers Needed for a Research Study of Bone Health and Muscle Strength – Children and adults with cystinosis are at risk for musculoskeletal disease. This research study, performed by Dr. Mary Leonard and Dr. Paul Grimm, will be the first comprehensive evaluation of bone structure and muscle strength in children and adults with cystinosis.
Research Study of Bone Marrow Transplant for Cystinosis Patients from Matched Related Donor – The clinical research study is being conducted at the Ronald Reagan UCLA Medical Center.