Cohort Descriptives

Variable Response
Cohort Name Project Cygnus
Cohort Acronym Cygnus
Study Overview This study is a feasibility study which has a Longitudinal Cohort design, following up participants at selected time points over a 1 year duration. The study will recruit 2 distinct groups: (1) patients with symptoms of cognitive impairment, and (2) study partners who are cognitively normal. The patients recruited to group 1 will have been recently referred to a Memory Assessment Service by their GP with suspected Mild Cognitive Impairment (MCI) & mild dementia. All patients referred to a Memory Assessment Service for this reason will be potentially eligible for inclusion in the study. Close friends or family members involved in looking after the cognitively impaired participants will also be asked to participate as study partners to attempt to measure the impact that looking after a partner, friend or family member with memory problems can have on a carer’s Quality of Life and other variables such as financial burden. Both cognitively impaired participants and their study partners will be given the option of additionally participating in two sub-studies: - Mobile data collection: Using a web/mobile app to collect self-reported data on a more regular basis from home - Wearable device: Using a wearable device that looks like a watch to collect information on activity and sleep
#Subjects at Baseline 500
Institution Name IXICO PLC., University of Manchester, Northern Health Science Alliance Network (NHSA)
City London, Manchester
Study/Database Website

http://www.ecygnus.com

Principal Investigator (PI) Derek Hill
Population Based Study? Yes
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? Through a combination of: In person, via questionnaire, via wearable device
Who carries out data collection? Interviewers, Clinicians, Clinical Staff
Does this take place in participants' homes or at a central location? Both - wearables is ongoing, clinical measurements are taken and questionnaire used for base data collection
Do participants take part individually or are families/partners involved? Individually and Family
Dementia cases ascertained as part of study: Yes
How many times followed up? 3
Study start date 4/1/2016 12:00:00 AM
Study end date 9/30/2017 12:00:00 AM
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Aged 18 years or older Partner, Family Member or Close Friend is a participant in CYGNUS in the cognitively impaired participant group. English speaking/able to understand study documents
Exclusion criteria - Aged younger than 18 years - Do not have capacity to consent - Previously referred to a memory assessment service themselves

Administration

Variable type Variables generally collected
Study ID Y
Age Y
Sex Y

Sociodemographic

Variable type Variables generally collected
Age Y
Age at last follow-up Y
Sex Y
Ethnicity Y
Years of education Y
Employment status Y
Socioeconomic status Y

Physical Health Status

Variable type Variables generally collected
Cardiovascular disease Y
Head trauma data Y

Health Care Utilisation

Variable type Variables generally collected
Medication use (Subgroup) Y
Hospital utilisation Y
Home care-domestic Y
Home care-personal care Y

Psychological Status

Variable type Variables generally collected
QOL-AD Y
UCLA-3 Items Loneliness Scale Y
Caregivers: Zarit Burden. Y
Time Spent Caring - study partners only Full Time Care - Cognitively impaired participants only Y
Pittsburgh Sleep Quality Index Y

Cognitive Status

Variable type Variables generally collected
Alzheimer's disease Y
Lewy Body disease Y
Huntington's disease Y
Parkinson's disease Y
Frontotemporal dementia Y
Vascular dementia Y
MCI Y
Subjective complaint Y
Memory Functioning Questionnaire Y

Lifestyle

Variable type Variables generally collected
Smoking Y
Passive smoking Y
Current smoking Y
Former smoking Y
Alcohol Y
Physical activity and exercise Y
Pittsburgh Sleep Quality Index Y

Physical Environment

Variable type Variables generally collected
Living situation Y

Physical Examination

Variable type Variables generally collected
Weight Y
Height Y
Neurological examination Y
Cardiovascular examination Y
Respiratory examination Y
BMI Y

Digital Phenotyping

Variable type Variables generally collected
Visual memory Y
Language Y
Working memory Y