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European Prevention of Alzheimer's Dementia Consortium
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Acronyms

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
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Latest News
  • Closing EPAD article published in the Alzheimer Europe magazine
    2021-02-24
  • Alzheimer Europe launches a report on data sharing in dementia research
    2021-02-23
  • Local actions to keep the EPAD Longitudinal Cohort data collection going
    2021-02-17
  • Neuronet releases its Knowledge Base dashboard
    2021-02-01
  • The final EPAD dataset is now available to the entire research community
    2020-11-30
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Twitter
Twitter
EPAD
EPAD
@IMI_EPAD

.@AlzheimerEurope has published a new edition of its “Dementia in Europe” magazine. It includes a closing article on @IMI_EPAD. Our co-leads @craig_ritchie68 and Serge Van der Geyten, reflect on the achievements of the project. Download the PDF here: bit.ly/DementiaInEuro… twitter.com/AlzheimerEurop…

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12:40 pm · 2021-02-24
Twitter
EPAD
EPAD
@IMI_EPAD

Last week, we held the first local @IMI_EPAD community meeting among the Scottish research sites, collaborators, academics & scientists who have been involved in our Longitudinal Cohort Study and now continue to contribute to the study locally More info⤵️ ep-ad.org/2021/02/17/loc… pic.twitter.com/MTKmanCURk

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6:51 am · 2021-02-24
Twitter
EPAD
EPAD
@IMI_EPAD

Check out the new @AlzheimerEurope report on #DataSharing in #dementia #research, which reviews recent changes in EU research policy and sets out recommendations to improve data sharing. It includes case studies from ADNI, @IMI_EPAD and @IMI_EMIF. ⬇️ Bit.ly/DataSharing_AE twitter.com/AlzheimerEurop…

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2:39 pm · 2021-02-23
Twitter
EPAD
EPAD
@IMI_EPAD

Scottish @IMI_EPAD members have been invited to join the first #EPADcommunity meeting. Today, we're discussing about publications, #data access, communications, participant panel, #network & #collaborations. Nice to see some #epadistas sharing their insights 👨‍⚕️👩‍🔬👩‍💻 pic.twitter.com/O1hLAVxk0Q

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2:23 pm · 2021-02-17
Twitter
EPAD
EPAD
@IMI_EPAD

The new issue of the @IMI2_NEURONET #newsletter is out with latest news on @IMI_EPAD, @IMI_AMYPAD, @RADARCNS among others. Find out more here: bit.ly/Neuronet-Newsl… twitter.com/IMI2_NEURONET/…

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2:12 pm · 2021-02-15
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This work has received support from the EU/EFPIA Innovative Medicines Initiative Joint Undertaking EPAD grant agreement nº 115736

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