Clinical Studies Volunteers
Adults Needed for Dr. Eichler’s Study on Distal Myopathy
Dear Adults with Cystinosis:
We need your help to answer a very short survey (3-5 minutes) conducted as part of Dr. Florian Eichler’s research study on distal myopathy. The purpose of the study is to create a disease specific assessment tool for the cystinosis patient community. If you are interested in volunteering, please contact the study coordinator Rachel Duong at (617) 724-1330. For additional information, please click on the link to read more about this short survey and how you can help. More information.
Thank you in advance for helping the entire cystinosis community!
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.