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ABOUT THE REGISTRIES
Medical and interventional therapy of acute ischemic stroke is undergoing rapid change. Not only is the armamentarium expanding with new therapeutic applications, but both experienced and newly trained physicians are enthusiastic to meet the treatment challenges associated with acute stroke.
Across the nation, many non-profit, government, healthcare and private industries are taking initiatives to support the medical establishment's efforts to improve stroke care and education. Specifically, local hospitals and first responders are working together to insure that victims of stroke can be reached, evaluated and treated within the recommended time prescribed by the newest stroke guidelines. On the national front, the American Heart Association in conjunction with the American Stroke Association is leading a vital campaign in multiple local communities to increase awareness of stroke and educate the public at large about immediate steps to take in the event of stroke. Additionally, various medical societies, through their organizations as well as individual members, are actively working to further the advancement of stroke care through hosting educational conferences and publishing clinical papers on various aspects of stroke therapy.
Yet, despite such extensive initiatives on a variety of fronts, there remain entrenched obstacles to stroke treatment. While endovascular techniques are gaining momentum, specialists have inadequate knowledge concerning the optimal appropriate drug, dose, patient population or timing for emergency interventional stroke therapy even though there is wide-spread acknowledgment of the profound patient benefits achievable with this therapy. In some cases, combination pharmaceutical and/or mechanical/pharmaceutical therapies may in fact be the optimal means to treat certain acute strokes, just as has been determined to be the case concerning acute myocardial infarction.
Further, the optimal means to directly prevent certain kinds of strokes and reduce risk of secondary strokes are not defined in current medical practice, causing a sizable gap in information that is crucial to the physician's decision-making process.
INterventional Stroke Therapy Outcomes Registry™ (INSTOR™)
In an effort to meet these obstacles with information-based solutions, the INterventional Stroke TherapyOutcomes Registry™ (INSTOR™) was created. INSTOR™ is intended to be the definitive evaluation for interventional stroke therapy, comprising all means to optimally reverse the acute insult.
The purpose of INSTOR™ is to help physicians and hospitals provide the most appropriate and cost-effective care to achieve optimal outcomes in patients with acute ischemic stroke. To accomplish this objective, INSTOR™ is collecting and analyzing observational outcomes data on hospitalized patients treated by interventional techniques. Following statistical analysis of the data, comparative data reports will be provided to participating Investigators. The goals of this registry are to improve patient outcomes by: 1) assessing the impact of clinical decisions on patient outcomes, 2) evaluating the care delivery process, both individually and collectively, and 3) providing feedback for optimal critical pathways for treating stroke patients.
INTRacranial Angioplasty and STenting Outcomes Registry (INTRASTOR™)
Investigators in the field of neurology have described intracranial atherosclerotic disease, the same disease process that causes myocardial infarctions (heart attacks), as the cause of between 5% and 10% of all strokes. Ultimately, this life-threatening disease causes plaque that blocks blood flow in the brain, just as plaque in the coronary vessels block flow in the heart. Interestingly, recent information indicates that a decrease in blood flow to the brain may contribute to Alzheimer's disease.
For over a decade, intracranial atherosclerotic disease has been treated by intracranial angioplasty/stenting, a procedure that has saved many patients from stroke and actually prevented many more strokes. While the concept of improving blood flow to the brain by angioplasty and/or stenting has been explored in data collecting studies in a rudimentary fashion, the vastly improved technical capability to perform this procedure now mandates a closer look as this treatment option clearly may offer major benefit to large numbers of patients.
INTRASTOR is intended to provide the evidence necessary to confirm that this procedure in the brain will result in prevention of stroke and is equivalent to angioplasty and stenting in coronary vessels to prevent myocardial infarction. A web-based voluntary data collection registry, this site is designed to capture information regarding patient demographics, lesion location, medications, the specifics of the balloons and/or stents used, outcomes, and complications. Combined data from all sites will also be collected, analyzed, and reported. We believe the collected data will allow better patient selection, improve outcomes, and demonstrate the efficacy of this procedure.
NeuroVascular Research Foundation (NVRF)
INSTOR™ and INSTRASTOR™ are owned and operated by the NeuroVascular Research Foundation (NVRF). The mission of the Foundation is to advance the field of stroke prevention and emergency stroke therapy. NVRF is formed solely for charitable and scientific purposes within the scope of section 501(c) (3) of the Internal Revenue Code. NVRF is intended to facilitate the input of multiple medical societies and experts from several fields of medicine involved in the field of emergency stroke therapy and cutting edge forms of stroke prevention. NVRF is a non-profit, private foundation established exclusively to provide a structure for acquiring outcomes data and to facilitate the exchange of scientific and educational information obtained from such research for the purpose of growing and improving the field of stroke therapy. This objective will be accomplished by data acquisition and analysis to document and perfect the specific therapies for emergency stroke rescue, data acquisition to perfect diagnosis and treatment of atherosclerotic disease that causes stroke, and the overall management of patient outcomes registries to establish specific trends for all forms of interventional stroke therapy and prevention. Finally, a major component inherent in advancing the explosive new field of Neurointervention is to facilitate the dissemination of the scientific and educational findings from this data, educate the healthcare establishment by means of evidenced based medicine, and teach medical professionals the optimal methods for stroke prevention and interventional stroke therapy.
Both registries are voluntary data collection registries and are the first patient registries launched for these purposes under the auspices of the NVRF. Sites from around the nation as well as outside the United States are enthusiastically participating by submitting their treatment results to these registries. Participation is entirely voluntary in that physicians treating stroke are already utilizing these therapies.
The American Society of Interventional and Therapeutic Neuroradiology (ASITN), and the Society of Interventional Radiology (SIR), in association with the American Society of Neuroradiology (ASNR) have officially endorsed the registries and have expressed their support for these initiatives. Endorsement is also anticipated from other medical societies, such as the American Association of Neurosurgery (AANS), the American Heart Association/American Stroke Association (AHA/ASA) and the American Academy of Neurology (AAN).
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