Enrollment Procedures for the Clinical Core

For individuals with dementia who wish to participate in studies:

You must carry a diagnosis of Alzheimer's disease or other dementia (frontotemporal dementia, primary progressive aphasia, Pick's disease, Vascular dementia, Cortical Lewy Body disease and others), established a thorough evaluation prior to enrollment to assure that individuals are eligible to participate. If you think you may have dementia but have not yet been evaluated, you must first undergo a clinical evalation. This clinical evaluation is not part of the research.

Individuals can seek clinical evaluation at the Northwestern Medical Faculty Foundation's Neurobehavior and Memory Health Service to establish a diagnosis prior to consideration for enrollment.

• Once the diagnosis is confirmed by our research team, participants are provided with a full description of the research procedures and are asked to sign informed consent. The consent form must be signed before any research procedures can take place.
• Research procedures include: donation of a blood sample for genetic analysis for risk factors and storage for future research studies. The results of this blood testing are not given to research participants since the clinical application of these tests has not been established. Participants will be asked to provide a medical and social history and take paper-and-pencil tests (about 2 hours). Participants and their families will meet with the social worker to assess needs.
• Participants are asked to return to the core center twice a year for a brief reassessment.
• Consent includes agreeing to be contacted from time to time by affiliated research projects. Participation in these extra research projects is up to the core participant.
  
• Brain endowment (autopsy) is discussed with all participants. It is encouraged but not a prerequisite to participation.
• The participant must have a friend, family member, or other caregiver who can provide information about daily activities and observable symptoms and who is willing to complete questionnaires.
  

For older individuals without serious cognitive decline who wish to participate in studies:

• Must meet screening criteria which exclude illnesses that could interfere with cognitive function.
  
• Must provide the name of a friend or family member who can answer questions about daily activities and whether or not there are observable symptoms of forgetfulness.
  
• Procedures are the same as those outlined above for individuals with cognitive decline.
  
• We will notify participants if we detect cognitive difficulties that put one at risk for dementia at any point during our studies and will make the appropriate recommendations for evaluation and follow up.

Related Information

ADCC Clinical Core

Visit our Volunteer For A Study page. If you would like to participate in a research study and/or clinical trial, please contact us at 312-695-2343 or by e-mail at CNADC-Admin@northwestern.edu