2015 Research

 

The KD group in Japan published a study on exercises that they found can improve swallowing in KD patients. The paper can be found here. These exercises are quite straightforward and can be done anywhere one can lie down.


NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act. To read the article, click here.


NIH Releases Results from Exercise Trial 

We are contacting you to let you know the results of the exercise trial in SBMA here at the NIH.  The trial did not show a statistically significant change in the primary outcome measure, the AMAT, overall.  However, a subgroup analysis done after the study did indicate that low-functioning men with SBMA may respond better to functional exercise. We also found that functional exercise is safe and well tolerated.  

Please click HERE for the results and supplemental charts.  


The exercise trial paper "A Randomized Controlled Trial of Exercise in Spinal Bulbar Muscular Atrophy" was published on behalf of the American Neurological Association. The abstract with the results are shown below. You can read or down load the entire article by clicking here

A Randomized Controlled Trial of Exercise in Spinal and Bulbar Muscular Atrophy

 Abstract 

Objective

To determine the safety and efficacy of a home-based functional exercise program in spinal and bulbar muscular atrophy (SBMA).

Methods

Subjects were randomly assigned to participate in 12 weeks of either functional exercises (intervention) or a stretching program (control) at the National Institutes of Health in Bethesda, MD. A total of 54 subjects enrolled, and 50 completed the study with 24 in the functional exercise group and 26 in the stretching control group. The primary outcome measure was the Adult Myopathy Assessment Tool (AMAT) total score, and secondary measures included total activity by accelerometry, muscle strength, balance, timed up and go, sit-to-stand test, health-related quality of life, creatine kinase, and insulin-like growth factor-1.

Results

Functional exercise was well tolerated but did not lead to significant group differences in the primary outcome measure or any of the secondary measures. The functional exercise did not produce significantly more adverse events than stretching, and was not perceived to be difficult. To determine whether a subset of the subjects may have benefited, we divided them into high and low functioning based on baseline AMAT scores and performed a post hoc subgroup analysis. Low-functioning individuals receiving the intervention increased AMAT functional subscale scores compared to the control group.

Interpretation

Although these trial results indicate that functional exercise had no significant effect on total AMAT scores or on mobility, strength, balance, and quality of life, post hoc findings indicate that low-functioning men with SBMA may respond better to functional exercises, and this warrants further investigation with appropriate exercise intensity. 

NIH Releases Results from Exercise Trial 

We are contacting you to let you know the results of the exercise trial in SBMA here at the NIH.  The trial did not show a statistically significant change in the primary outcome measure, the AMAT, overall.  However, a subgroup analysis done after the study did indicate that low-functioning men with SBMA may respond better to functional exercise. We also found that functional exercise is safe and well tolerated.  

Please click HERE for the results and supplemental charts.