Cohort Descriptives

Variable Response
Cohort name Dominantly Inherited Alzheimer Network (DIAN) Observational Study
Cohort acronym DIAN
General Study Overview DIAN is an international collaborative project, with 14 centres worldwide participating. The aim of DIAN is to study, on a larger scale than has ever been possible before, those changes that occur in the brain in FAD, even prior to the onset of any symptoms. The research visits involve a number of assessments, including neurological examination, psychology testing, an MRI scan, blood tests and an optional lumbar puncture. So far, the results of the DIAN observational study have been very enlightening, with several influential research papers published. The DRC is the only UK site involved in the DIAN study.
Institution name University College London
Department name Dementia Research Centre
City London
Study or database website

http://www.ucl.ac.uk/drc/research/current-studies/fad

Principal Investigator (PI): Name Professor Martin Rossor
PI: Address Dementia Research Centre, Institute of Neurology, Queen Square, London, WC1N 3BG
PI: email

m.rossor@ucl.ac.uk

PI: phone +44 (0)20 3448 4773
Administrative Contact (AC): Name Professor Martin Rossor
AC: Address Dementia Research Centre, Institute of Neurology, Queen Square, London, WC1N 3BG
AC: email M.rossor@ucl.ac.uk
AC: phone +44 (0)20 3448 4773
Technical Contact/Data manager (TC): Name Norah Epie
TC: Address Dementia Research Centre, Institute of Neurology, Queen Square, London, WC1N 3BG
TC: email

n.epie@ucl.ac.uk

TC: phone 020 344 83804
Population based study? No
Family based study? Yes
Clinical based sample? Yes
Is there follow-up data available? Yes
Were participants included prior to development of dementia (may refer to controls only)? Yes
Were participants included prior to development of MCI (may refer to controls only)? Yes
How is data collected? In person
Does this take place in participants' homes or at a central location? Central
Do participants take part individually or are families/partners involved? Family
Was diagnosis/primary outcomes made blind to exposure variables? No
Study start date 1991-01-01
Study end date 2017-12-31
Is study ongoing? Yes

Demographic and Clinical Information

Variable Response
Demographics
Age Yes
Sex Yes
Ethnicity Yes
Physical examinations
Any physical examination performed? Yes
Neurological examination Data available
Medical conditions

Cognitive Outcomes

Variable Response

Non-Cognitive Clinical Outcomes

Variable Response
Dementia diagnosis
Alzheimer's dementia Yes
Lewy Body Disease Yes
Huntingtons Disease No
Parkinsons Disease No
Frontotemporal dementia No
Vascular dementia No
MCI No
Functional rating scales
Health service utilisation

Imaging

Variable Response
Structural T1 Acquired
Acquired
PET Not acquired
Not acquired
SPECT Not acquired
Not acquired
MEG Not acquired
Not acquired
In vivo Spectroscopy Not acquired
Not acquired

Genetics

Variable Response
Overview
Gene screening

Biological samples

Variable Response
Blood collected Yes
Blood Metabolic Analytes
Urine collection
Urine No
Autopsy data
Autopsy No
Saliva
Saliva collected No
Cortisol No
CSF
CSF collected Yes

Brain donation

Variable Response
Are information sheets made available to representative or consultees? Yes

Lifestyle

Variable Response
Drugs of abuse assessment
Obesity and associated risk factors
Employment status
Living situation
Socioeconomic status
Sleep assessment

Ethics and Engagement

Variable Response
Participant engagement
Ethics
Is there a process in place for participants who lose capacity? Yes
Do participants provide contact information for a person to act as a potential consultee? Yes
Disclosure
What kinds of finding do these relate to? (imaging, genotyping, etc) Imaging and clinical data.
Recruitment
Consent and recontact

Data Management

Variable Response
Consent for linkage to routine data