Glossary

Our glossary below represents the most common acronyms and abbreviations used within the TREAT-NMD network. Periodically we will update this page with any more we encounter.

If you would like an entry to be included in this list please contact michael.hails@newcastle.ac.uk

A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
A
AD Action Duchenne (UK)
AFM Association Française contre les Myopathies (France)
AON Antisense Oligonucleotides
AOs Antisense Oligonucleotides
B
BMBF Bundesministerin für Bildung und Forschung (German Federal Ministry of Education and Research)
BMD Becker Muscular Dystrophy
C
CDA Confidential Disclosure Agreement
CINRG Cooperative International Neuromuscular Research Group
CMD Congenital Muscular Dystrophy
CMS Congenital Myasthenic Syndromes
CMT Charcot Marie Tooth
CoE Centre of Excellence
CoI Club of Interest
CRO Clinical Research Organisation
CSO Chief Scientific Officer
CTCC Clinical Trials Co-ordination Centre
CTSR Clinical Trial Site Registry
D
DFSG Duchenne Family Support Group
DHEA Dehydroepiandrosterone
DM1 Myotonic Dystrophy 1
DMD Duchenne Muscular Dystrophy
DoW Description of Work also known as Action Plan
E
EAMDA European Alliance of neuroMuscular Disorders Associations
EBB EuroBioBank
EC Ethics Council
EFGCP European Forum for Good Clinical Practice
EMEA European Medicines Agency
ENMC European NeuroMuscular Centre
ESHG European Society of Human Genetics
EUCERD European Union Committee of Experts on Rare Diseases
EURORDIS European Organisation for Rare Diseases
F
FDA Food and Drug Administration
FSHD Facioscapulohumeral Muscular Dystrophy
FSMA Families of SMA
FTELE Fondazione Telethon
G
GB Governing Board
H
HIBM Hereditary inclusion body myopathy
I
ICC International Coordinating Committee (SMA)
ICH International Conference on Harmonisation
ILC Industrial Liaison Council
IMT Integrative Management Team
INSERM Institut National de Santé et de la recherche médicale
IP Integrated Project
IPUDC Intellectual Property Use and Dissemination Committee
J
JPA Joint Program of Activities
JPI Joint Program of Integration
JPR Joint Program of Research
JPSE Joint Program of Spreading Excellence
K
KI Karolinska Institute
L
LGMD Limb Girdle Muscular Dystrophy
LUMC Leids Universitair Medisch Centrum (Leiden University medical Centre)
M
MD Muscular Dystrophy
MDA Muscular Dystrophy Association
MDC Muscular Dystrophy Campaign
MDEX A consortium of exon skipping researchers in the UK
MD-NET German Muscular Dystrophy Network
MFM Motor Function Measure
MHRA Medicines and Healthcare products Regulatory Agency
MRC Medical Research Council
MRI Magnetic Resonance Imaging
MTM-CNM Myotubular (Centronuclear) Myopathy
N
NC Network Coordinator
NIEH Fodor Jozsef National Institute of Environmental Health (Hungary)
NIH National Institutes of Health (USA)
NMD Neuromuscular Diseases
NoE Network of Excellence
Novamen A French SME specialised in Research Promotion and Management Consulting
O
OC Oversight committee
OM Outcome Measures
P
PAR Periodic Activity Report
PEALS Policy, Ethics and Life Sciences Research Centre
PEC Project Ethics council
PFM Project Finance Manager
PI Principal Investigator
PPMD Parent Project Muscular Dystrophy
Q
QA / QC Quality Assurance / Quality Control
R
ROM Registry of Outcome Measures
S
SBMA Spinal and Bulbar Muscular Atrophy
SC Sub Committee
SMA Spinal Muscular Atrophy
SME Small to Medium Enterprise
SMN Survival Motor Neuron gene
SNT Santhera Pharmaceuticals
SOP Standard Operating Procedures
STAC Science and Technology Advisory Council
STREP Specific Targeted Research Project
T
TACT TREAT-NMD Advisory Committee for Therapeutics
TGDOC TREAT-NMD Global Database Oversight Committee
TNCC TREAT-NMD Coordination Centre
TREAT-NMD Translational Research in Europe – Assessment & Treatment of Neuromuscular Diseases
U
UAB Universitat Autonoma de Barcelona
UCL Université Catholique de Louvain
UCLON University College London
UNEW University of Newcastle
UNIFE Neuromuscular & Molecular-Genetic Unit of the University of Ferrara
UPPMD United Parent Projects Muscular Dystrophy
V
VC Venture Capital
W
WES Whole Exome Sequencing
WMS World Muscle Society
 
12 Apr 2017