AAICAlzheimer’s Association International ConferenceBig annual conference around Alzheimer’s disease
ACCORDAcademic and Clinical Central Office for Research and DevelopmentUniversity of Edinburgh and NHS joint office to facilitate clinical research
ADAlzheimer’s DiseaseProgressive 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.
ADLActivities of Daily LivingRefers to basic activities of daily living including driving, cooking, cleaning, handling money
ADNetAustralian Dementia NetworkResearch programme bringing together Australia’s leading dementia researchers and clinicians in an effort to prevent or effectively treat dementia
ADNIAlzheimer’s Disease Neuroimaging InitiativeStudy aiming to improve clinical trials for the prevention and treatment of Alzheimer’s disease
AEAdverse EventUnfavourable and unintended event that may occur during a drug trial
AMYPADAmyloid Prevention of Alzheimer’s DementiaSub-study of EPAD which involves undergoing PET imaging
APOEApolipoprotein EA gene. A certain type (APOE-ε4) is associated with Alzheimer’s disease
AWIAdults with IncapacityAdults who are not able to make legal decisions for themselves
BCBalancing CommitteeA committee who manages the proportion of individuals who are considered to have a different level of Alzheimer’s disease in the EPAD cohort (LCS)
BISQBrain Injury Screening QuestionnaireQuestionnaire about any traumas suffered to the head
BMIBody Mass IndexA score derived from the weight and height of an individual
CCSCClinical Candidate Selection CommitteeA committee who reviews all the applications from drug companies who wish to run their drug in the EPAD PoC platform
CDRClinical Dementia RatingAn assessment measure used to assess how well a patient’s memory is functioning
CIChief/Coordinating InvestigatorLead researcher of the study
CSFCerebrospinal fluidWater like fluid found in the brain and spinal cord, contains certain proteins referred to as biomarkers
CTADClinical Trials on Alzheimer’s DiseaseBig annual conference around clinical trials in Alzheimer’s disease
CTIMPClinical Trial of Investigational Medicinal ProductDrug trial
DAEMDetecting Alzheimers & Enhancing Memory
DSMBData Safety Monitoring BoardMonitors trial safety
EBMEvent Based ModellingAn analytical technique to describe changes and the probability of an event taking place (e.g. conversion to dementia)
ECGElectrocardiogramA test to check a heart’s rhythm and electrical activity
ELSIEthical Legal Social ImplicationsWork stream focusing on the ethical, legal and social implications around Alzheimer’s disease
EMAEuropean Medicines AgencyAn organisation to evaluate and approve new medicinal products
ENEEPAD Neuropsychological ExaminationThinking and memory tasks undertaken in the EPAD study
EPADEuropean Prevention of Alzheimer’s DementiaEPAD study
GAGeneral AssemblyAnnual meeting with all the EPAD researchers and some participant representatives
GCPGood Clinical PracticeA code of conduct for doing clinical research
GDPRGeneral Data Protection RegulationsRules all researchers follow when managing research participants personal data
ICFInformed Consent FormConsent form signed at the beginning of the study
IDMCIndependent Monitoring Committee(TBC)
IMIInnovative Medicines InitiativeA huge private public partnership which funds the EPAD study
IMPInvestigational Medicinal ProductStudy drug
IOIntervention OwnerDrug company
IRASIntegrated Research Access SystemOnline system for applying for ethics approvals
IVIntravenousAdministered with a syringe
JDRJoint Dementia ResearchOnline database for volunteering in dementia research
LCSLongitudinal Cohort StudyA study carried out over several years with many study visits
LPLumbar PunctureA procedure to obtain spinal fluid
MCIMild Cognitive ImpairmentA state between normal healthy ageing and dementia
MMSEMini Mental State ExaminationA memory and thinking test
MRIMagnetic Resonance ImagingA black and white picture of the anatomy of the brain
NHMRCNational Health & Medical Research CouncilAustralia’s leading expert body in health and medical research
PCParent CohortsBig existing studies where EPAD recruits participants from
PET scanPositron Emission Tomography scanA scan which is used to observe metabolic processes in the body
PIPrincipal InvestigatorLead researcher of a particular area (e.g. a country) in a study
PISParticipant Information SheetSource of information explaining study procedures to study participants
PKPharmacokineticStudy of the way the body absorbs, distributes, and gets rid of a drug
POper os (oral)By mouth
PoCProof Of ConceptA clinical trial of a drug which is in phase 2 of the drug development (looking at whether a drug is working)
PoCProof Of Concept platformThe EPAD drug studies platform which can run several PoC studies at the same time
PPGSParticipant Panel Group Study(TBC)
PVPrepad VelocityRecruitment into EPAD from local memory clinics
R&DResearch and DevelopmentWork directed towards the innovation, introduction, and improvement of products and processes.
RACIResponsible, Accountable, Consulted, Informed(TBC)
RBANSRepeat Battery (for the) Assessment (of) Neuropsychological StatusA memory and thinking test
REPResidual Effect Period(TBC)
RGResearch GovernanceSets 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
RPResearch ParticipantSubjects taking part in research
SAESerious Adverse EventSerious unfavourable and unintended event that may occur during a drug trial
SAGScientific Advisory GroupA group of experts who advise the project about a particular aspect
SARSerious Adverse ReactionSerious unfavourable and unintended reaction that may occur during a drug trial
SBHRScottish Brain Health RegisterA database of individuals who have signed up for research into brain health
SDIPScottish Dementia Informatics PlatformAn 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.
SDRCScottish Dementia Research ConsortiumSupports the development and expansion of high quality, co-ordinated, collaborative dementia research throughout Scotland
SUVRStandard Uptake Value Ratio(TBC)
TDCTrial Delivery CentreEPAD study sites
UoE/UEDINUniversity of Edinburgh_
WPWork PackageA group of EPAD researchers who work within a particular branch of the study