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

Henschke, Cornelia

doi:10.1016/j.healthpol.2012.01.013

Cited by 30 publications

(35 citation statements)

References 29 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…From the patients’ standpoint, the system ensures a rapid information flow, minimizing the time it takes to obtain benefits, and simplifying the paperwork involved [63]. On the other hand, it enables users to produce on-line statistics based on the data entered and to run searches on all the contents, making the registry a powerful research tool.…”

Section: Discussionmentioning

confidence: 99%

A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry

Mazzucato

Pozza

Manea

et al. 2014

Orphanet J Rare Dis

View full text Add to dashboard Cite

BackgroundAlthough rare diseases have become a major public health issue, there is a paucity of population-based data on rare diseases. The aim of this epidemiological study was to provide descriptive figures referring to a sizable group of unrelated rare diseases.MethodsData from the rare diseases registry established in the Veneto Region of north-east Italy (population 4,900,000), referring to the years from 2002 to 2012, were analyzed. The registry is based on a web-based system accessed by different users. Cases are enrolled by two different sources: clinicians working at Centers of expertise officially designated to diagnose and care patients with rare diseases and health professionals working in the local health districts. Deaths of patients are monitored by Death Registry.ResultsSo far, 19,547 patients with rare diseases have been registered, and 23% of them are pediatric cases. The overall raw prevalence of the rare diseases monitored in the population under study is 33.09 per 10,000 inhabitants (95% CI 32.56-33.62), whilst the overall incidence is 3.85 per 10,000 inhabitants (95% CI 3.67-4.03). The most commonly-recorded diagnoses belong to the following nosological groups: congenital malformations (Prevalence: 5.45/10,000), hematological diseases (4.83/10,000), ocular disorders (4.47/10,000), diseases of the nervous system (3.51/10,000), and metabolic disorders (2,95/10,000). Most of the deaths in the study population occur among pediatric patients with congenital malformations, and among adult cases with neurological diseases. Rare diseases of the central nervous system carry the highest fatality rate (71.36/1,000). Rare diseases explain 4.2% of general population Years of Life Lost (YLLs), comparing to 1.2% attributable to infectious diseases and 2.6% to diabetes mellitus.ConclusionsOur estimates of the burden of rare diseases at population level confirm that these conditions are a relevant public health issue. Our snapshot of their epidemiology is important for public health planning purposes, going to show that population-based registries are useful tools for generating health indicators relating to a considerable number of rare diseases, rather than to specific conditions.

show abstract

Section: Discussionmentioning

confidence: 99%

A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry

Mazzucato

Pozza

Manea

et al. 2014

Orphanet J Rare Dis

View full text Add to dashboard Cite

show abstract

“…40. A study conducted in Germany with regards to assistive devices for people with ASL shows that, outside of other bureaucratic problems, public financing covers only low prices assistive devices (Henschke 2012). 41.…”

Section: Discussionmentioning

confidence: 99%

Does accessible technology need an ‘entrepreneurial state’? The creation of an EU market of universally designed and assistive technology through state aid

Ferri

2015

International Review of Law, Computers & Technology

View full text Add to dashboard Cite

EU State aid law has sought to enable people with disabilities to obtain employment, yet has not been explicitly included in the toolbox of policy options to improve the availability and choice of accessible technology within the EU Internal market. This seems to be the consequence of an inherent bias against State intervention in the market, which is mostly unwelcome since it can limit open and free competition. This also reiterates the 'less-aid' policy and the purely economic approach to State aid professed by the European Commission. Against this background, this article discusses the potential for EU State aid policy to foster both 'design for all' and innovative assistive devices for people with disabilities. It seeks to argue that the goal of an EU-wide market of accessible technology can be achieved using EU State aid law. In particular, this article aims to highlight that a more targeted use of EU State aid law can lead developers to increase the production of accessible goods, to adjust or reduce prices and to provide consumers with a greater degree of choice in a greater number of marketplaces. Whilst it adopts a legal approach, this analysis relies inter alia on economic evidence and recalls the pamphlet recently published by Mazzuccato, from which the title of this work has drawn inspiration.

show abstract

“…Processing different orthopaedic, rehabilitative and adjustment aids helped managing the emerging needs during the course of the disease within the framework of the interdisciplinary care [9].…”

Section: Discussionmentioning

confidence: 99%

Sclerosis Lateral Amyotrophic, A Vision From Palliative Care

Rodríguez¹,

García²,

Vargas³

et al. 2014

J Palliat Care Med

View full text Add to dashboard Cite

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

Cited by 30 publications

References 29 publications

A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry

A population-based registry as a source of health indicators for rare diseases: the ten-year experience of the Veneto Region’s rare diseases registry

Does accessible technology need an ‘entrepreneurial state’? The creation of an EU market of universally designed and assistive technology through state aid

Sclerosis Lateral Amyotrophic, A Vision From Palliative Care

Contact Info

Product

Resources

About