(PSYCHIATRIC TIMES) - It almost looks like a younger sibling of the Alzheimer Disease Neuroimaging Initiative (see box, plus Advances in Imaging for Diagnosis of Alzheimer Disease, Applied Neurology, May 2005, page 19) of the NIH. The program, emerging from Sweden's Karolinska Institute, is seeking international research partners to participate in an Alzheimer disease (AD) project that begins this month. The project is part of a larger neurosciences program called Swedish Brain Power, which is an interdisciplinary network for research, diagnosis, and therapeutics.
The entire project, which is run by Bengt Winblad, MD, PhD, a professor in the Department of Clinical Neuroscience and Family Medicine and director of the Alzheimer Center at the Karolinska University Hospital in Huddinge, began with SEK 100 million in funding (approximately USD 14 million), to be apportioned over 5 years and shared among its major programs. The program that most resembles ADNI focuses specifically on familial Alzheimer disease as a model for common forms of AD.
EVERYBODY HAS A PIN
Sweden is in a unique position to carry out such research. Since 1947, all Swedes have been given a permanent personal identity number (PIN) that is associated with all their records. Because medical care in Sweden is under government aegis, medical records are attached to the PIN; thus, complete records are available on every citizen and legal resident. Furthermore, Sweden maintains many health-related registries; a Swedish twin registry is maintained at the Karolinska Institute, which includes data on 80,000 pairs of twins, and a familial dementia registry is maintained at the Karolinska University Hospital's Department of Geriatric Medicine. Furthermore, aside from the fact that various entities maintain health records, the Swedish population is willing to participate in scientific studies, said Harriet Wallberg-Henriksson, MD, PhD, president of the Karolinska Institute.
Samuel Gandy, MD, PhD, head of the Farber Institute for Neurosciences at Thomas Jefferson University in Philadelphia, explained what makes such a study so valuable: "The Nordic countries have the records--complete records going back for hundreds of years--and we don't have that sort of record-keeping in any accessible form in this country."
In fact, according to Caroline Graff, MD, PhD, a researcher at the Karolinska Institute in Huddinge and director of the AD program under Swedish Brain Power, the national familial dementia registry contains medical and genealogic data for more than 300 families. Furthermore, church records dating back to the 1800s may give clues to the cognitive status of forebears of these persons. How? Persons were tested on their knowledge of Christianity, and these notes in the church records may provide clues about whether an individual suffered from a cognitive impairment, explained Graff.
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