Implementation of Flexible Endoscopic Evaluation of Swallowing (FEES) and Standardized FEES Scores in the Diagnostic Work-up of Dysphagia in Spinal Muscular Atrophy - DYS-SMA Trial
Status: Recruiting
Location: See location...
Intervention Type: Diagnostic test
Study Type: Interventional
Study Phase: Not Applicable
SUMMARY
The major aim of this project is to assess comprehensively frequency and extent of dysphagia and bulbar dysfunction in SMA1, 2, and 3 patients by applying FEES and validated dysphagia scores. Further aims are to follow changes of dysphagia over time in newly diagnosed patients, and in subjects starting treatment with one of the new therapeutic SMA drugs. Special attention will be paid to subjects treated with Risdiplam. If applicable, the data will be compared between groups receiving different drugs.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• All patients with genetically determined 5q-linked SMA followed at the neuromuscular center Gießen
• \- Informed and written consent signed by the patient or a legal guardian
Locations
Other Locations
Germany
University Hospital Giessen and Marburg, Campus Giessen
RECRUITING
Giessen
Contact Information
Primary
Samra Hamzic, MA
samra.hamzi@neuro.med.uni-giessen.de
+4964198559233
Time Frame
Start Date: 2022-02-01
Estimated Completion Date: 2024-09-30
Participants
Target number of participants: 79
Treatments
Experimental: Spinal Muscle Atrophy
All patients with Spinal Muscle Atrophy type 1 to 4
Related Therapeutic Areas
Sponsors
Leads: University of Giessen