| 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 |
