Familial Alzheimer’s Disease Registry

The cause of Alzheimer's disease and other forms 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's disease or other form of dementia.

To contact the Familial Alzheimer's Disease (FAD) Registry directly, please call (416) 978-7461.

What is Alzheimer’s Disease?

Dementia is a class of devastating neurological illnesses characterized by progressive intellectual deterioration. Alzheimer’s disease (AD) 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.

What Does Participation in the Registry Mean?

Individuals who contact the FAD Registry will receive a family history questionnaire which will allow us to determine if your family is appropriate for the study. 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 Tanz 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's Disease?

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

For More Information

If you would like to receive the family history questionnaire please e-mail the Director’s Office: crnd.secr@utoronto.ca.