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Toronto, Ontario  M5S 3H2 
e-mail: crnd.info@utoronto.ca
phone:(416) 978-1871 fax: (416) 978-1878
 

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Familial Alzheimer Disease (FAD) Registry

To contact FAD directly, please call (416) 978-6912.

What is Alzheimer Disease?

Dementia is a class of devastating neurological illnesses characterized by progressive intellectual deterioration. Alzheimer’s Disease is the most common cause of Dementia, but other diseases can also cause it. Unfortunately, there is no curative treatment available at this time for any of the dementias although some medicines are helpful to control some symptoms. It is now estimated that this prevalent disorder affects approximately 10% of the population over age 65.

Familial Alzheimer Disease Registry

The cause of Alzheimer Disease or other form of dementia remains unknown although it is now clear that some families have an increased risk of developing this disorder. In order to explore the potential role of hereditary factors, a registry has been established of those families in whom two or more individuals have the suspected diagnosis of Alzheimer Disease or other form of dementia.

What Does Participation in the Registry Mean?

Those individuals who contact the Registry will receive a family history questionnaire in the mail that should be completed and returned as soon as possible. Not all families will be appropriate for further study. However, if your family tree is felt to be informative, we will then seek consent from you and other family members to obtain blood samples that are required for further scientific research studies. These studies will be carried out under the direction of Dr. Peter St. George-Hyslop at The Centre for Research in Neurodegenerative Diseases, University of Toronto. Please be assured that all information obtained will remain confidential.

Will I Learn If I Am At Risk To Develop Alzheimer Disease?

The research studies will be of no immediate benefit to you or your family, but should enhance our understanding of the development of Alzheimer Disease or other form of dementia and might suggest ways of treating this illness in the future. This Registry is not presently designed to provide information to individual family members as to whether they are at risk to develop Alzheimer Disease or other form of dementia. Similarly, no one else will be able to determine which family member (if any) are at risk to develop Alzheimer Disease.

For More Information

If you would like to receive the family history questionnarie please e-mail the research co-ordinator at crnd.info@utoronto.ca