Incorporation of the International Spinal Cord Injury Data Set elements into the National Institute of Neurological Disorders and Stroke Common Data Elements.

OBJECTIVES: To develop consistent variable names and a common database structure for the data elements in the International Spinal Cord Injury (SCI) Data Sets. SETTING: National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDE) Project and The Executive Committee of the International SCI Standards and Data Sets committees (ECSCI). METHODS: The NINDS CDE team creates a variable name for each defined data element in the various International SCI Data Sets. Members of the ECSCI review these in an iterative process to make the variable names logical and consistent across the data sets. Following this process, the working group for the particular data set reviews the variable names, and further revisions and adjustments may be made. In addition, a database structure for each data set is developed allowing data to be stored in a uniform way in databases to promote sharing data from different studies. RESULTS: The International SCI Data Sets variable names and database specifications will be available through the web sites of the International Spinal Cord Society (http://www.iscos.org.uk), the American Spinal Injury Association (http://www.asia-spinalinjury.org) and the NINDS CDE project web site (http://www.CommonDataElements.ninds.nih.gov). CONCLUSION: This process will continue as additional International SCI Data Sets fulfill the requirements of the development and approval process and are ready for implementation.

The 2008 William M. Feinberg lecture: prioritizing stroke research.

UNLABELLED: Stroke is a tremendous burden to health worldwide both in the developed and developing world. Current levels of research funding do not adequately reflect this burden, particularly when expected increases in stroke rates are considered. Of course, an investment in stroke research is only justified if a return can be expected. The ultimate goal of stroke research is to reduce the burden of disease, and clinical trials are the clearest expression of the value of research because their results can directly impact health. In a review of stroke trials funded by the US National Institute of Neurological Disorders and Stroke, we found that the overall impact of the trials was dramatically positive and justified the entire research budget of the Institute. Nonetheless, there were obvious opportunities for improvement. METHODS: meta--research--on topics not just relevant to stroke, but to the study of all disease.