Implementation of FEES in Spinal Muscle Atrophy

Launched by UNIVERSITY OF GIESSEN · Feb 25, 2021

Keywords

ClinConnect Summary

This clinical trial is looking into swallowing difficulties, known as dysphagia, in patients with Spinal Muscular Atrophy (SMA), a genetic condition that affects muscle control. Researchers will use a special test called FEES, which involves looking at the throat and swallowing function, to understand how often and how severely these swallowing issues occur in patients with different types of SMA (types 1, 2, and 3). The study also aims to track how swallowing problems may change over time, especially in newly diagnosed patients and those starting new treatments, including a drug called Risdiplam.

To participate in this trial, patients need to have a confirmed diagnosis of SMA linked to a specific gene. They must be able to provide consent, either themselves or through a legal guardian. However, individuals with certain serious health issues, those who are pregnant or breastfeeding, or those in a very poor state of health may not be eligible. Participants can expect to undergo assessments that will help doctors better understand swallowing difficulties in SMA, which could lead to improved care and treatment options in the future.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 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
• Exclusion Criteria:
• • Physical illness that, according to its type and severity, could interfere with the planned assessments, could have an influence on the parameters to be investigated or could endanger the patient or test person during the course of the investigation.
• • Pregnancy or lactation and a positive pregnancy test
• • Acute suicidal tendency or external danger
• • Poor general condition