Clinical Studies Volunteers
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 firstname.lastname@example.org.
The Cystinosis Research Foundation is dedicated to funding research that will lead to improved treatments and a cure for cystinosis. 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.
Cystinosis Recruitment Oct 25, 2017
Dr. Doris Trauner and her research group at the UCSD School of Medicine are conducting a research study to evaluate the relationship between sleep, memory and thinking in adults with cystinosis. We are looking for adults with cystinosis to participate in an overnight sleep study and cognitive testing focusing on memory.
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.