Archived Research Updates
December 2015 - The KD group in Japan just 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. A pdf of the exercises can be found here. The exercises are done 3 times a day, every day.
September 29, 2015 - NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act. To read the article, click here.
July 2015 - 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
To determine the safety and efficacy of a home-based functional exercise program in spinal and bulbar muscular atrophy (SBMA).
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.
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.
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.
May 13, 2015 - Interview with Kenneth Fischbeck, MD, of the National Institute of Neurological Disorders and Stroke (NINDS) on recent studies being conducted at the NINDS, in collaboration with Novartis, to understand, and find a treatment for, Kennedy's disease.
April 30, 2015 - Research grants are available for 2015