The Neuromuscular Clinic at Massachusetts General Hospital (MGH) led by Dr. Reza Seyedsadjadi, is currently enrolling participants for a research study focused on swallowing difficulties and muscle weakness in individuals with nephropathic cystinosis.
This study aims to better understand how these muscles are affected—and whether exercises or devices can help make them stronger.
Participants will:
- Complete one initial visit at MGH for imaging, breathing, and walking tests
- Be placed in one of three treatment groups and receive a device with instructions for at-home exercises
- Have virtual check-ins every 3 months
- Return after one year for follow-up tests
Eligibility requirements:
- Between 16 and 70 years old
- Have nephropathic cystinosis and distal myopathy
- Experience difficulty swallowing
- Speak and write in English
To learn more or see if you qualify, contact Carina Stafstrom at cstafstrom@mgh.harvard.edu or call 617-726-5175. Download the full study information here.