Provision and financing of assistive technology devices in Germany: A bureaucratic odyssey? The case of amyotrophic lateral sclerosis and Duchenne muscular dystrophy

Health Policy ◽  
2012 ◽  
Vol 105 (2-3) ◽  
pp. 176-184 ◽  
Author(s):  
Cornelia Henschke
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Assistive Technology ◽  
Lateral Sclerosis

Carbonic anhydrase III in serum in muscular dystrophy and other neurological disorders: relationship with creatine kinase

1991 ◽  
Vol 37 (1) ◽  
pp. 36-39 ◽  
Author(s):  
Mitsuhlro Ohta ◽  
Yasuko Itagaki ◽  
Nobuyukl Itoh ◽  
Kyozo Hayashi ◽  
Hirosh Nishitani ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Creatine Kinase ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Carbonic Anhydrase ◽  
Neurological Disorders ◽  
Muscular Atrophy ◽  
Carbonic Anhydrase Iii ◽  
Severity Of The Disease ◽  
Lateral Sclerosis

Abstract We measured with a radioimmunoassay the concentrations of carbonic anhydrase III (CA-III, EC 4.2.1.1) in sera from 68 patients with muscular dystrophy, 10 carriers of Duchenne muscular dystrophy (DMD), and 63 patients with other neurological disorders. The values obtained were compared with those for creatine kinase (CK, EC 2.7.3.2). Serum CA-III was strikingly increased in patients with DMD (mean, 274.4 micrograms/L) and congenital (Fukuyama-type) (182.8 micrograms/L) and limb-girdle (203.7 micrograms/L) dystrophies and positively correlated with the activities of CK in patients with DMD. CA-III concentration decreased with the subjects' age and the severity of the disease, similar to the tendency observed between age or severity and the concentration of CK. We found moderately increased CA-III in patients with polymyositis, myotonic dystrophy, amyotrophic lateral sclerosis, spinal progressive muscular atrophy, or Kugelberg-Welander disease and in carriers of DMD.

scholarly journals How Loan Bank of Assistive Technology Impacts on Life of Persons with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases: A Collaborative Initiative

2021 ◽  
Vol 18 (2) ◽  
pp. 763
Author(s):  
Thais Pousada ◽  
Jessica Garabal-Barbeira ◽  
Cristina Martínez ◽  
Betania Groba ◽  
Laura Nieto-Riveiro ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Assistive Technology ◽  
Positive Impact ◽  
Outcome Measurement ◽  
Neuromuscular Diseases ◽  
Three Dimensions ◽  
Assistive Device ◽  
Cross Sectional ◽  
The Impact ◽  
Lateral Sclerosis

(1) Background: The study is focused on the implementation of outcome measurement tools to assess the impact of an assistive device from a loan bank in the lives of people with Amyotrophic Lateral Sclerosis and Neuromuscular Diseases. The secondary purpose is to analyse the correct matching between the person and technology, derived from the counselling of an occupational therapist. (2) Methods: Cross-sectional study. The sample was formed by 28 people with rare neurodegenerative disorders. A specific questionnaire, the Psychosocial Impact of Assistive Device Scale (PIADS), and the Matching Person and Technology (MPT) tool were applied to collect the data. (3) Results: The dimension of the PIADS with the best score was competence, and the variations according to gender were not remarkable. The three dimensions of the PIADS (competence, adaptability, and self-esteem) were correlated positively between them and with the mean score of the MPT tool (p < 0.01). The type of assistive technology (AT), diagnosis, and correct match between person–technology are the main factors that condition a positive impact. (4) Conclusions: The results noted the importance of assessing the needs, demands, and contexts of people with rare neurodegenerative diseases to prescribe the best AT. Loan banks of AT have to be considered a valid service that complements their lack in public health services.

scholarly journals Errata: Measuring Disease Severity in Duchenne and Becker Muscular Dystrophy

2011 ◽  
Vol 1 (2) ◽  
Author(s):  
Melinda F. Davis ◽  
Katalin H. Scherer ◽  
Timothy M. Miller ◽  
F. John Meaney
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Muscular Dystrophy ◽  
Disease Severity ◽  
Muscle Weakness ◽  
Respiratory Function ◽  
Rating Scale ◽  
Becker Muscular Dystrophy ◽  
Progressive Muscle Weakness ◽  
Lateral Sclerosis ◽  
Disease Specific

Reports an error in Davis et al. (2010).  The functional motor scale used in Davis et al. (2010) was the EK (Egen Klassifikation) Scale, rather than the Amyotrophic Lateral Sclerosis Functional Rating Scale (Steffensen et al., 2002; Cedarbaum & Stambler, 1997).  Both scales are 10-item, disease-specific measures that assess mobility and respiratory function in individuals with progressive muscle weakness.  This error does not change the conclusions. DOI:10.2458/azu_jmmss_v1i2_davis

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