Study: Remote Exercise Training

To enroll:  e-mail vkimonis@hs.uci.edu

Status:  currently enrolling patients to participate

1. Lead Researcher: Virginia Kimonis

 

2. Study Title: Benefit of Remote Exercise Training in Familial Myopathy.

 

3. Purpose of Study: To evaluate a home based respiratory resistance exercise treatment in individuals with progressive neuromuscular disease.

 

Aim 1. To evaluate the effectiveness of respiratory muscle exercise training on lung function. 

 

Aim 2. To evaluate the effectiveness of respiratory muscle exercise training on assessments of quality of life, and muscle strength.

 

4. Eligibility:  We will recruit include 25 individuals with VCP mutations who are 18 and older with mild-to-moderate muscle weakness and normal cognitive capacity.   

 

5. Location:  No travel is required to participate in this study.

 

6. Time Commitment: The study duration is 40 weeks.

 

7. Anticipated Benefits:  The potential benefit of the respiratory exercise training may be improvement of lung function. There are also potential benefits of improved muscle strength and function.

8. Compensation (if any):  Participants will be rewarded with a CureVCP Disease Inc. T-shirt, or cap and $200 gift card upon completion of the study.

9. Contact Name, Department, Phone Number and Email:

 

Name:   Virginia Kimonis, MD.  9498240521/0571  vkimonis@hs.uci.edu                           

 

Institution:  University of California, Irvine, 101 The City Drive, Orange CA 92868              

 

Position:  Professor of Pediatrics, Division of Genetics and Genomic Medicine, Department of Pediatrics, UC Irvine

Letter from Dr. Kimonis

Dear VCP patients and families,

 

I am excited to announce that I will be starting a clinical trial (remotely) of a respiratory resistance training study in patients with myopathy or muscle disease.  We will be studying the effects of a respiratory resistance exercise training in improving lung function, in addition to muscle strength and function. We are looking to recruit 25 individuals to make the study statistically significant. You will be provided a training device and a gauge to measure respiratory pressures.   You will be involved in a breathing exercise that you can do at home twice daily. No travel is required to participate in this study. The study duration is 40 weeks.

 

Participants will receive a CureVCP Disease Inc. T-shirt, or cap and $200 upon completion of the study. The potential benefit may be improvement in the respiratory function and sense of well.

 

The study will also be posted on the Cure VCP Disease, Inc., https://www.curevcp.org/ website

 

Please feel free to contact me if you have any questions.

 

Best wishes

 

Virginia

 

Virginia Kimonis, MD. MRCP
Professor, Dept. of Pediatrics,

Division of Genetics and Genomic Medicine
Univ. of California-Irvine Med. Center
Lab and FEDEX: Hewitt Hall Building, 2nd Floor, Room 2038 or 2501

843 Health Sciences Road
Irvine, CA 92697, Tel:(949)824-0571/

Fax:(949)824-0171   

Email: vkimonis@uci.edu