Where to Turn for Research: Human Studies of eFAD

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University College London, UK

Summary
This center has among the longest-standing research initiatives in the area of human eFAD research. Starting even before the first genetic discovery of an AD gene in 1991, scientists in London have followed families forward, and they are now seeing the adult children of their initial FAD volunteers. Recognizing the special burden FAD families face, the center has created C.A.N.D.I.D., an established care and counseling program that supports families on a range of life issues beyond providing clinical care. The program welcomes families with all types of early-onset dementia, not only AD. In research, this center is distinguished for its use of serial MRI, i.e., annual scans that document how the brain overall, as well as small defined sub-areas, shrink in a characteristic pattern as carriers slowly approach the onset of symptoms.

Study Leaders/Contacts
Professor Martin Rossor and Professor Nick Fox 
Dementia Research Centre, 
Institute of Neurology, University College London 
Queen Square, London WC1N 3BG 
E-mail: Martin.Rossor@drc.ion.ucl.ac.uk 
E-mail: Nick.Fox@drc.ion.ucl.ac.uk

Procedures

  • Genetic counseling/testing if desired.
  • Serial MRI scans.
  • Serial neuropsychologic testing.
  • Serial clinical assessments.
  • MRS scans.
  • PET PIB scans planned.
  • Spinal fluid biochemistry planned.

Family Support
Travel and lodging are reimbursed in part. Interested families can contact Dr. Fox to be put in touch with a family who is participating in this study and is willing to share its experience confidentially.