Progress Update: Tongue electro-impedance myography: a window into FSHD

Posted by Friends of FSH Research on Nov 22, 2021

Update by Dr. Sanchez
see grant Tongue electro-impedance myography: a window into FSHD
Note: After review of results, clinical portion approved. Grant extended from 30-Nov-2021 to 30-Jun-2022. Additional funding of $24,250.

Despite the pandemic and the challenges associated to perform bulbar function testing in patients with
FSHD related to COVID-19, we are on track and have accomplished the following:

1. We have obtained all IRB approval needed as well as a study protocol and Informed Consent forms for
2. FSHD patients specific to the study conducted here.
3. We have established detailed protocols and, despite the current worldwide shortage of electronic com-
4. ponents, obtained the necessary equipment to build 2 devices in time.
5. We have built, tested and validated 2 devices for tongue testing as well as tongue depressors for
6. individual patient use. One device is currently at the clinic.
7. We have published a paper in IEEE Open Journal of Engineering in Medicine and Biology describing
8. the technology (attached).
9. We have trained Sarah Moldt to use the device and perform bulbar function testing.
10. We have established a regular schedule between Dr. Butterfield and Dr. Sanchez lab meetings via
11. Zoom.
12. We have created list of recruitable FSHD patients that we plan to enroll in the second phase of the
13. project.
14. We have recruited and collected data tongue EIM data on 8 FSHD patients.
15. We have recruited Elaine Wen-Ying Wong and are now moving into full recruitment mode and data
16. analyses over the coming months.

Preliminary analyses support our premise that electrical impedance myography (EIM) values are altered in patients with FSHD with respect healthy tongue values (reported in the IEEE paper). Collecting more data will allow us to perform a formal analysis with additional clinical outcomes.

See publication A Bioimpedance-Based Device to Assess the Volume Conduction Properties of the Tongue in Neurological Disorders Affecting Bulbar function