unwanted or harmful reaction which occurs after administration of a drug
Artificial intelligence (AI) is the simulation of human intelligence processes by machines
Amino acids are the building blocks to forming
proteins: they are the acids formed from the coding of a triplet of bases in
the DNA. There are 20 amino acids, and most have several triplets which code
Evidence based on personal accounts rather than facts or research
An animal model utilises a non-human species to be studied to understand particular biological phenomena, to provide insight into the workings of other organisms.
The expression of agreement
A record of the changes that have been made to a database or a file
This is data that is collected on patients at the beginning of the clinical trial.
Extremely large data sets that may be analysed computationally to reveal patterns, trends and associations
biobank is a place that stores biological samples for use in research
Relating to the chemical processes and
substances that occur within living organisms
An interdisciplinary field of science that
combines biology, computer science, information engineering, mathematics and statistics
to analyse data
Any sample or specimen of material derived from
The area of biology involving living systems and organisms used to develop a product
Blinding means setting up a trial in a way which prevents anyone from knowing which participants are in the control group and which are in the treatment group.
It is the small section at the end of the press release that provides some background information about the organisation or group, including what the group does, its mission and past accomplishments. It comes under the “Notes to Editor” section along with relevant links to the website and social media channels.
When the leg curves outward at the knee
Drugs that have been given a name by a company
for the purpose of advertising
The change in levels of spending because of a
A person who is generally not affected with the condition (at that moment), but carries one faulty copy of a gene.
A medical professional that has direct contact
The presence of more than one disorder in the
A group of people with a shared characteristic
The alternative to the proposed treatment or
The alternatives to the proposed treatment or
Providing permission for something to happen or
agreement to do something
Contract research organisation
Corporate Social Responsibility
Corporate Social Responsibility (CSR) is the voluntary activities undertaken by a company to operate in an economic, social, and environmentally sustainable manner.
Cost of illness
A measure of the value a new treatment provides by looking at the costs per unit of benefit.
A measure of the value a new treatment provides by looking at the costs per unit of benefit.
A way of raising funds by asking a large number
of people each for money
Obtaining information or input into a
task/project by enlisting the help of a large number of people
The maintenance and assurance of the accuracy and consistency of data over its entire life cycle.
All personal information is protected in the UK by the Data Protection Act (1998). This means that researchers have to put in all the necessary safeguards to protect the confidentiality of the information they collect about research participants. They should explain the patient information sheet:
Data Protection Act
Characterised by progressive deterioration and loss of function in the organs or tissues
A particular sector of the population.
A disorder of structure of function in an
Dissemination involves communicating the findings of a research project to a wide range of people who might find it useful. This can be done through:
It is important to feed back the findings of research to research participants.
A chemical substance which makes up the genes, and which contains the information needed for the body to work.
The amount of or frequency that a drug is given
Any substance that causes a change in an
The act or process of making an exact copy of something
Efficacy refers to the ability of a medicine to provide a beneficial effect (a positive benefit/risk ratio) when studied in a clinical trial.
When talking in terms of efficacy vs. effectiveness, effectiveness relates to how well a treatment works in the real world practice of medicine, as opposed to efficacy, which measures how well a treatment works in clinical trials or laboratory studies.
End of life
Types of terminal medical conditions that have become advanced, progressive and incurable. The criteria required to meet this description differ between decision makers across the different regions.
A network of membranes within animal cells used to facilitate reactions
Ethics is the name given to the code of practice based on a set of decent, fair, and moral principles and guidelines that researchers should abide by when conducting research. Any research that will seek to gain personal confidential information or to test a new intervention or treatment on people must get ethical approval from a Research Ethics Committee.
European Medicines Agency
The body in the European Union that regulates the use of medicines across all EU states.
European Reference Networks
networks of healthcare providers across Europe that aim to facilitate
discussions on complex or rare conditions
Not everyone is applicable to take part in a clinical trial. Volunteers can be excluded for a number of reasons such as age, gender, type of condition, and other symptoms.
Testimony about a scientific, technical, or professional issue given by a person qualified to testify because of familiarity with the subject or special training in the field.
To make a prediction about the future, using
Information needed for the body to work, stored in chemical form (DNA).
An organisms complete set of DNA
a comprehensive description of an individual’s
health, including their quality of life and likely outcome of their condition
(known as a prognosis)
Having different characteristics and qualities
A state of having different characteristics and qualities.
The automation of research such that experiments
can be conducted on a large scale with repetition
Performed on computer or via computer simulation
When a study is performed with microorganisms,
cells or molecules outside of their normal biological context
When a study tests the effect of drugs on
whole, living organisms
Not everyone is applicable to take part in a clinical trial. Volunteers can be included for a number of reasons such as age, gender, type of condition, and other symptoms.
Incremental cost-effectiveness ratio
Informed consent requires trial participants to be provided with a clear explanation of the trial and associated risks and benefits to make a fully informed decision about participating.
Denotes ownership of an idea and can include
copyrights, patents and trademarks
A treatment option such as a drug, type of
surgery, or medical device.
A treatment option such as a drug, type of
surgery, or medical device
Inverted pyramid structure
The inverted pyramid is a writing style used by journalists which follows a standard format. In this pattern, the most important facts are presented at the beginning followed by additional information in the subsequent paragraphs. The opening paragraph answers the 5 W’s and 1 H: who, what, when, where, why, and how.
Molecules with identical formulas but distinct
The term 'lay' means non-professional. In research, it refers to the people who are neither academic researchers nor health or social care professionals.
When a product has been given a marketing
authorisation (product licence) by a medicines regulator, meaning it can be
placed on the market
A comprehensive summary of previous research on a topic.
The approval to market a medicine in one,
several or all of the European Union Member States
A type of model that assumes that patients move between different health states through the course of their disease. These health states are associated with particular costs and quality of life levels, and the time spent in these health states determines the overall costs and benefits experienced by the patients.
An intermediate or end product of metabolism
Literature mining is the process of extracting facts/data
from text in the scientific literature. Literature mining can generate new
hypotheses by scrutinising large numbers of publications
A biological or computational system used to
simulate a disease or biological process, on which tests are done to describe
and explain phenomena that cannot be experienced directly
A group of two or more atoms held together by
A change in a gene.
National Institute for Health and Care Excellence
Public organisation that develops medical guidelines
for health and care in England
A natural history study is a medical study of people who have, or are at risk of developing, a specific condition over an extended period of time.
Typically of an action or activity- wicked or criminal
Pharmaceutical alternative which claims physiological benefits
Off-label use is when a drug is used for something other than for what it was approved.
The cost in terms of the value of the treatment compared to the best alternative option that was not chosen. For example, if the NHS decided to spend
money on a new treatment for a rare disease, an opportunity cost would be that
the money spent on this new treatment could not be spent on anything else.
A medicine developed for a rare disease.
A broad term often used to describe a variety of
results from trials
Outcomes measures are measurements of the effects of a treatment or service. They might include physical measurements - for example measuring blood pressure - or psychological measurements - for example measuring people's sense of well-being. So if someone takes part in research, they may be asked questions or may be asked to have extra tests to assess how well the treatment or service has worked.
A broad term often used to describe a variety of results from trials
The branch of medicine that involves the care of
infants, children and adolescents
A participant is someone who takes part in a research project. Sometimes participants are referred to as research "subjects".
This is a type of research where researchers and people who use services or carers are partners in a research project. The research addresses an issue of importance to service users or carers, who are involved in the design and conduct of the research, and the way the findings are made available. The aim of the research is to improve people's lives.
This is not a research method - it's an approach to research, a philosophy.
An organisation set up to represent the views of
patients and families around all issues relating to a condition, from
diagnosis, care and management, and treatment.
Patient information sheet
patient registry is a centralised database that systematically collects
information about people who are affected by a particular condition or have
specific interactions with a health service.
Patient reported outcome
health outcome directly reported by the patient who experienced it
Peer reviewing is where a research proposal or a report of research is read and commented on by people with similar interests and expertise to those who wrote the proposal or report. Peer reviewers might be members of the public, researchers, or other professionals. Peer review helps to check the quality of a report or research proposal. Members of the public who act as peer reviewers may choose to comment on:
The point of view that an analysis is conducted
A pharmaceutical company is a company that develops, produces, and markets drugs for use as medications.
study of the use and effect of drugs in a well-defined, large population
The study of how a drug enters, moves through
and leaves the body. This can include its absorption, distribution, breakdown
Clinical trial programmes are divided into
different stages, called phases. There are three main phases where Phase I
trials typically involve testing a drug on a small number of healthy volunteers
to assess safety, Phase II trials are testing on a small number of patients to
assess the efficacy and Phase III allow this to be scaled up to much larger
The set of observable characteristics in a living organism
The full set of an individual's observable characteristics reflecting genetic inheritance, genetic mutations, and environmental influences. Phenotypic data can include the results of clinical tests, scans, and descriptions.
A small scale preliminary study to evaluate the
feasibility, duration, cost and side effects prior to embarking on a full-scale
A placebo is an inactive medicine which has no treatment value.
Predatory price hikes
A greater liking for one option over another
A press release is an essential communication tool that is used to get your message across to the media in one fell swoop. It follows the structure of a typical news story including relevant quotes and 5 Ws and 1 H (who? what? Where? When? Why? and how?). Whether you want to announce a fundraising event, launching an awareness campaign, promoting an accomplishment or engaging in any clinical trial/research programme, a press release can be used to get the right publicity.
The proportion of a chosen population that are
affected by a single disease.
A biologically inactive compound which can be
metabolised in the body to produce a drug
The extent to which an individual can work
A protocol is the plan for a piece of research. It usually includes information about:
A protocol describes in great detail what the researchers will do during the research. Usually, it cannot be changed without going back to a research ethics committee for approval.
Pseudonymisation is a process that removes or replaces information that identifies an individual within a data set. This may involve replacing names or other identifiers with a less easily recognisable reference number.
A condition caused or aggravated by a mental factor such as internal conflict or stress
Measured by the quality of something rather than its quantity
Qualitative research is used to explore and understand people's beliefs, experiences, attitudes, or behaviours. It asks questions about how and why a "quality" is being measured by the research. Often the term "holistic" is used, meaning that the complexities of human behaviour are preserved in the study. Qualitative research might ask questions about why people want to stop smoking. It would not ask how many people have tried to stop smoking. It does not collect data in the form of numbers. Qualitative researchers use methods like focus groups and interviews.
Quality-adjusted life year
A numerical measurement that combines quality of life and life expectancy
Quality-adjusted life years
numerical measurement that combines quality of life and life expectancy
Measured by the quantity of something rather than its quality
In quantitative research, researchers collect data in the form of numbers. So they measure things or count things a "quantity" is being measured. Quantitative research might ask a question like how many people visit their GP each year, or what proportion of children have had an MMR vaccine, or whether a new drug lowers blood pressure more than drugs that are usually used. Quantitative researchers use methods like surveys and clinical trials.
Randomisation randomly assigns patients to a control group or treatment group in clincial trials. It removed bias from trials, which could make the test unreliable.
A person who is appointed by an organisation to report on the proceedings of its meetings.
The EU defines a condition as 'rare' if it affects less than 1 in 2000 people.
A collection of information about individuals.
Following regulatory approval, a reimbursement
body will decide whether the manufacturer will be paid the cost of the drug,
based on a cost-effectiveness calculation. In the UK, the National Institute
for Health and Care Excellence (NICE) decide whether a drug will be reimbursed,
i.e. whether the NHS will fund patients' treatments
The reduction or disappearance of the signs and
symptoms of a disease
Research Ethics Committee
Groups of professionals and service users who review the ethical considerations of research studies.
Funding provided to a charitable organisation with restrictions around its use to a specific project.
A drug for which development has been halted,
sometimes because tests are not successful, but often because pursuing them simply does not present a tangible business opportunity
A person's natural height
The preparation of a drug/compound from its
Systematic reviews aim to bring together the results of all studies addressing a particular research question that have been carried out around the world. They provide a comprehensive and unbiased summary of the research. For example, one clinical trial may not give a clear answer about the effectiveness of a treatment. This might be because the difference between the treatments being tested was very small, or because only a small number of people took part in the trial. So systematic reviews are used to bring the results of a number of similar trials together, to piece together and assess the quality of all the evidence. Combining the results from a number of trials may give a clearer picture.
The length of time that is examined in a model,
typically in terms of years.
The process of turning research findings and discoveries into practical applications that are of benefit to patients.
The procedures for treatment of an illness. This
will often take the form of a decision tree, which includes all the possible
outcomes for a medical condition and all the appropriate elements of care a
patient would receive at each stage.
Conditions that only affect an even smaller group of patients than orphan diseases, typically affecting fewer than 1 in 50,000 individuals (All Wales Medicines Strategy Group, 2015).
Funding provided to a charitable organisation without any restricted around its use.