Acronym	Definition	Explanation
AAIC	Alzheimer’s Association International Conference	Big annual conference around Alzheimer’s disease
ACCORD	Academic and Clinical Central Office for Research and Development	University of Edinburgh and NHS joint office to facilitate clinical research
AD	Alzheimer’s Disease	Progressive degenerative disease that results in a loss of brain cells. It is the most common form of dementia, affecting 60-80 % of people with dementia above 65 years of age.
ADL	Activities of Daily Living	Refers to basic activities of daily living including driving, cooking, cleaning, handling money
ADNet	Australian Dementia Network	Research programme bringing together Australia’s leading dementia researchers and clinicians in an effort to prevent or effectively treat dementia
ADNI	Alzheimer’s Disease Neuroimaging Initiative	Study aiming to improve clinical trials for the prevention and treatment of Alzheimer’s disease
AE	Adverse Event	Unfavourable and unintended event that may occur during a drug trial
AMYPAD	Amyloid Prevention of Alzheimer’s Dementia	Sub-study of EPAD which involves undergoing PET imaging
APOE	Apolipoprotein E	A gene. A certain type (APOE-ε4) is associated with Alzheimer’s disease
AWI	Adults with Incapacity	Adults who are not able to make legal decisions for themselves
BC	Balancing Committee	A committee who manages the proportion of individuals who are considered to have a different level of Alzheimer’s disease in the EPAD cohort (LCS)
BISQ	Brain Injury Screening Questionnaire	Questionnaire about any traumas suffered to the head
BMI	Body Mass Index	A score derived from the weight and height of an individual
CCSC	Clinical Candidate Selection Committee	A committee who reviews all the applications from drug companies who wish to run their drug in the EPAD PoC platform
CDR	Clinical Dementia Rating	An assessment measure used to assess how well a patient’s memory is functioning
CI	Chief/Coordinating Investigator	Lead researcher of the study
CSF	Cerebrospinal fluid	Water like fluid found in the brain and spinal cord, contains certain proteins referred to as biomarkers
CTAD	Clinical Trials on Alzheimer’s Disease	Big annual conference around clinical trials in Alzheimer’s disease
CTIMP	Clinical Trial of Investigational Medicinal Product	Drug trial
DAEM	Detecting Alzheimers & Enhancing Memory
DSMB	Data Safety Monitoring Board	Monitors trial safety
EBM	Event Based Modelling	An analytical technique to describe changes and the probability of an event taking place (e.g. conversion to dementia)
ECG	Electrocardiogram	A test to check a heart’s rhythm and electrical activity
ELSI	Ethical Legal Social Implications	Work stream focusing on the ethical, legal and social implications around Alzheimer’s disease
EMA	European Medicines Agency	An organisation to evaluate and approve new medicinal products
ENE	EPAD Neuropsychological Examination	Thinking and memory tasks undertaken in the EPAD study
EPAD	European Prevention of Alzheimer’s Dementia	EPAD study
GA	General Assembly	Annual meeting with all the EPAD researchers and some participant representatives
GCP	Good Clinical Practice	A code of conduct for doing clinical research
GDPR	General Data Protection Regulations	Rules all researchers follow when managing research participants personal data
ICF	Informed Consent Form	Consent form signed at the beginning of the study
IDMC	Independent Monitoring Committee	(TBC)
IMI	Innovative Medicines Initiative	A huge private public partnership which funds the EPAD study
IMP	Investigational Medicinal Product	Study drug
IO	Intervention Owner	Drug company
IRAS	Integrated Research Access System	Online system for applying for ethics approvals
IV	Intravenous	Administered with a syringe
JDR	Joint Dementia Research	Online database for volunteering in dementia research
LCS	Longitudinal Cohort Study	A study carried out over several years with many study visits
LP	Lumbar Puncture	A procedure to obtain spinal fluid
MCI	Mild Cognitive Impairment	A state between normal healthy ageing and dementia
MMSE	Mini Mental State Examination	A memory and thinking test
MRI	Magnetic Resonance Imaging	A black and white picture of the anatomy of the brain
NHMRC	National Health & Medical Research Council	Australia’s leading expert body in health and medical research
PC	Parent Cohorts	Big existing studies where EPAD recruits participants from
PET scan	Positron Emission Tomography scan	A scan which is used to observe metabolic processes in the body
PI	Principal Investigator	Lead researcher of a particular area (e.g. a country) in a study
PIS	Participant Information Sheet	Source of information explaining study procedures to study participants
PK	Pharmacokinetic	Study of the way the body absorbs, distributes, and gets rid of a drug
PO	per os (oral)	By mouth
PoC	Proof Of Concept	A clinical trial of a drug which is in phase 2 of the drug development (looking at whether a drug is working)
PoC	Proof Of Concept platform	The EPAD drug studies platform which can run several PoC studies at the same time
PPGS	Participant Panel Group Study	(TBC)
PV	Prepad Velocity	Recruitment into EPAD from local memory clinics
R&D	Research and Development	Work directed towards the innovation, introduction, and improvement of products and processes.
RACI	Responsible, Accountable, Consulted, Informed	(TBC)
RBANS	Repeat Battery (for the) Assessment (of) Neuropsychological Status	A memory and thinking test
REP	Residual Effect Period	(TBC)
RG	Research Governance	Sets out the responsibilities of the individuals and organisations involved in research, including funders, researchers, organisations employing researchers, and healthcare organisations. This is to enhance ethical and scientific quality, promote good practice, reduce adverse incidents and ensure lessons are learned
RP	Research Participant	Subjects taking part in research
SAE	Serious Adverse Event	Serious unfavourable and unintended event that may occur during a drug trial
SAG	Scientific Advisory Group	A group of experts who advise the project about a particular aspect
SAR	Serious Adverse Reaction	Serious unfavourable and unintended reaction that may occur during a drug trial
SBHR	Scottish Brain Health Register	A database of individuals who have signed up for research into brain health
SDIP	Scottish Dementia Informatics Platform	An initiative which aims to link health and social care data to improve understanding about relationships between diagnosis and treatment and how personalised care and support can bring real benefits to the dementia community.
SDRC	Scottish Dementia Research Consortium	Supports the development and expansion of high quality, co-ordinated, collaborative dementia research throughout Scotland
SUVR	Standard Uptake Value Ratio	(TBC)
TDC	Trial Delivery Centre	EPAD study sites
UoE/UEDIN	University of Edinburgh	_
WP	Work Package	A group of EPAD researchers who work within a particular branch of the study