Title |
An international registry for neurodegeneration with brain iron accumulation
|
---|---|
Published in |
Orphanet Journal of Rare Diseases, September 2012
|
DOI | 10.1186/1750-1172-7-66 |
Pubmed ID | |
Authors |
Bernadette Kalman, Ronald Lautenschlaeger, Florian Kohlmayer, Boriana Büchner, Thomas Kmiec, Thomas Klopstock, Klaus A Kuhn |
Abstract |
We report the development of an international registry for Neurodegeneration with Brain Iron Accumulation (NBIA), in the context of TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration), an EU-FP7 - funded project. This registry aims to combine scattered resources, integrate clinical and scientific knowledge, and generate a rich source for future research studies. This paper describes the content, architecture and future utility of the registry with the intent to capture as many NBIA patients as possible and to offer comprehensive information to the international scientific community. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 2 | 100% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Scientists | 1 | 50% |
Practitioners (doctors, other healthcare professionals) | 1 | 50% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Germany | 2 | 6% |
Spain | 1 | 3% |
Unknown | 28 | 90% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Bachelor | 6 | 19% |
Researcher | 5 | 16% |
Student > Ph. D. Student | 2 | 6% |
Other | 2 | 6% |
Professor | 2 | 6% |
Other | 9 | 29% |
Unknown | 5 | 16% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 7 | 23% |
Neuroscience | 7 | 23% |
Agricultural and Biological Sciences | 4 | 13% |
Biochemistry, Genetics and Molecular Biology | 2 | 6% |
Chemistry | 2 | 6% |
Other | 3 | 10% |
Unknown | 6 | 19% |