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Glossary

This glossary explains key terms and concepts that are frequently used in the MDR-RA project. It is designed to make scientific, clinical, and technical language more accessible to patients, researchers, healthcare professionals, and other stakeholders.

A

ACR

(American College of Rheumatology) Response Criteria (ACR20 / ACR50 / ACR70) — a way to measure improvement in rheumatoid arthritis. For example, ACR20 means a 20% improvement in symptoms such as swollen joints, pain and blood tests.

A

Adherence

How well a person follows their prescribed treatment plan.

A

Adverse Event (AE)

Any unwanted medical problem that happens during a study.

A

Algorithm

A step-by-step set of instructions used by a computer to analyse data and make predictions. In MDR-RA, algorithms are used to analyze complex patient data and predict treatment response.

A

All-Cause Mortality

The total number of deaths during a study, regardless of cause.

A

Anemia

A condition where there are not enough red blood cells, which can cause tiredness.

A

Anti-CCP

Cyclic citrullinated peptide (CCP) antibodies are in the blood. These are also called “autoantibodies” because they are abnormal proteins that attack the body’s healthy cells by mistake instead of protecting the body.

A

Anti-Drug Antibodies (ADAs)

Antibodies made by the body against a biologic medication, which may reduce its effectiveness.

A

Artificial Intelligence (AI)

Computer systems that analyse large amounts of data to identify patterns and make predictions.

A

AUC

Stands for “area under the curve”. In terms of taking medications, the amount of the drug in the blood (called the concentration of the drug) rises, peaks, and then gradually decreases as the body processes it. If the concentration levels are placed on a graph over time, the total area under the curve of this graph line represents the body’s total exposure to the drug from the moment it is taken until it is fully cleared.

B

Baseline

The starting measurements taken at the beginning of a study.

B

B-Cell Depleting Therapy

Reduces the number of B-cells involved in autoimmune responses.

B

B-cell(s)

A type of cell that belongs to the immune system and originates from inside bone marrow. Also called “B-lymphocyte”.

B

Big Data

Very large and complex sets of information that require advanced computer tools to analyse. Big data often requires AI methods for interpretation.

B

Biologic DMARD (bDMARD)

A biologic medicine that targets specific parts of the immune system.

B

Biomarker

A measurable biological sign (for example a blood test) that gives information about disease activity.

B

Biosimilar DMARDs (bsDMARDs)

Highly similar versions of original biologic medicines, developed after the original patent expires. They have comparable safety and effectiveness.

B

Boolean Remission (ACR/EULAR Criteria)

A very strict definition of remission where several measurements must all be below specific limits.

C

Care Delivery Value Chain

A way of organising and understanding how healthcare is delivered for a specific condition — from diagnosis to long-term follow-up. It helps identify where improvements can increase patient outcomes and reduce unnecessary costs.

C

Care model

A structured framework or approach used in healthcare to deliver patient care. It defines how care is provided, how resources are allocated, and the roles of healthcare professionals involved in the care process.

C

CDAI (Clinical Disease Activity Index)

A score that measures RA activity using joint counts and patient/doctor assessments.

C

Clinical Decision Support System (CDSS)

A health information technology system that provides clinicians with patient-specific data, evidence-based guidelines, and decision-making support to improve diagnosis, treatment, and patient care. It can be a digital dashboard that assists clinicians in the care of complex patients, including rules and algorithms that help take the next step.

C

Clinical Trial

A research study testing treatments or medical tools in people.

C

Co-Creation

A collaborative, participatory approach to creating solutions by bringing together designers, experts, and, most importantly, the people directly affected by the problem. Although similar to co-design, in co-creation, stakeholders have a more active role and direct involvement in the different phases of the design process and production.

C

Co-design

An approach to design experiences, solutions or products in which stakeholders are treated as equal collaborators in the design process, i.e., a design process aimed at actively and intentionally involving relevant stakeholders in the design process to ensure that the outcome meets their needs. (Also known as co-operative design or participatory design.)

C

Comorbidity

Another disease or health condition that exists alongside RA.

C

Confounder

A factor that may influence study results and make interpretation difficult.

C

Conventional Synthetic DMARDs (csDMARDs)

Traditional medications made through chemical processes. Example: methotrexate.

C

Cost-effectiveness Analysis / Economic Evaluation

To compare different interventions in terms of their cost and health benefits.

C

CRP (C-reactive protein)

A blood marker of inflammation.

C

Cytokines

Small proteins that help immune cells communicate and drive inflammation.

D

DAS28 (Disease Activity Score using 28 joints)

A common RA disease activity score based on joint counts and blood tests.

D

Data Integration

Combining different types of information (clinical, laboratory, imaging, patient-reported data).

D

Deep Learning

An advanced form of AI inspired by how the brain works.

D

Deep Phenotyping

Collecting highly detailed biological and clinical information about patients.

D

Diagnostic Accuracy

The potential of a test to correctly detect the presence or absence of a disease.

D

Digital Health / Digital Tools

Digital health means using modern technology to support health and medical care. This includes things like smartphone apps, online health services, and wearable devices that track activity or health signals. These tools help people manage their health, talk to doctors from home, and handle medical information.

D

DMARD (Disease-Modifying Anti-Rheumatic Drug)

A medication that slows disease progression.

D

Drug Resistance (Multi-Drug Resistance)

When multiple treatments fail to control the disease.

E

Ecosystem

The network of organisations, healthcare professionals, researchers, patients, policymakers, data systems and technologies that work together to deliver healthcare and research.

E

Effect Modifier

A characteristic (such as age or sex) that changes how well a treatment works.

E

Efficacy

How well a treatment works under controlled study conditions.

E

Endotype

A subgroup of patients defined by specific biological mechanisms causing disease.

E

Endotype vs Phenotype

Phenotype: Observable characteristics or traits of a patient. Endotype: The underlying biological mechanism driving those traits.

E

Engagement

The active involvement, energy and commitment that stakeholders (patients, researchers, clinicians, policymakers) bring to a project.

E

ESR (Erythrocyte Sedimentation Rate)

A blood test that measures inflammation.

E

Explainable AI (XAI)

Artificial intelligence systems designed to provide transparent, understandable, and interpretable outputs, building trust in clinical decision-making.

E

Extrinsic Factors (EP)

External influences such as environment, lifestyle, smoking, stress, diet or access to care.

F

FACIT-Fatigue

A questionnaire measuring fatigue severity.

F

False Positive / False Negative

Incorrect test results.

F

Fibroblast(s)

Cells that are responsible for maintaining the structure of the joint and repairing damaged tissue.

F

Fibrosis

Thickening or scarring of tissue.

F

Forum group

A diverse group of people assembled to participate in a guided discussion about a particular product before it is launched, or to give ongoing feedback, for example a new scientific article or program.

F

Functional Magnetic Resonance Imaging (fMRI)

A type of radiation-free brain scan that shows which parts of the brain are active. It works by watching how blood flows in the brain. When a part of the brain is working harder, it needs more oxygen, so more blood goes there. The scan highlights these busy areas during specific tasks.

G

Genetics

Information carried in DNA that influences disease risk and treatment response.

G

Genome / Genomics

The complete set of genetic information in a person.

G

GLP (Good Laboratory Practice)

Quality standards for laboratory research.

H

Health Economics

Research studying costs and value of healthcare interventions.

H

Hepatotoxicity

Liver damage caused by medication.

H

Heterogeneity

Differences between patients in disease features or treatment response.

H

Histophenotype

A description of how tissue looks under a microscope, showing patterns that help understand how healthy the tissue is or how a problem might behave.

H

Hypersensitivity Reaction

An allergic reaction to a medication.

I

iCare-RA Tool

An AI-based clinical decision support tool developed in MDR-RA to predict optimal treatments.

I

IL-6 Inhibitors

Block interleukin-6, another important inflammatory protein.

I

Immunogenicity

The ability of a drug to trigger an immune response.

I

Inflammatory Pathway

A chain of immune reactions that lead to inflammation.

I

Intrinsic Factors (IP)

Internal biological characteristics such as genetics, immune system features, age or sex.

J

JAK Inhibitors

Targeted drugs that block inflammation-related signals inside cells.

K

Krenn Synovial Score

This score is used to assess the severity of synovitis that occurs in conditions such as rheumatoid arthritis. A higher score indicates more severe inflammation.

L

Latent disease modelling

This uses a statistical approach to uncover unobserved or unrealized groups (i.e., “latent classes”) that exist within a population. By looking at patterns in symptoms, test results, or imaging, it groups patients who naturally share similar disease features. These “hidden” groups can help researchers better understand why the disease looks or behaves differently from person to person. (See doi.org/10.1016/j.jclinepi.2022.05.008.)

L

Leukocytes

White blood cells involved in immune defence.

L

Longitudinal Study

A study that follows patients over time.

M

Machine Learning

A form of AI where computers learn patterns from data.

M

Methotrexate (MTX)

A commonly used first-line RA treatment.

M

Monocyte(s)

A cell type belonging to the immune system. These cells can be categorised by the presence or absence of specific receptors on their surfaces. For example, CD14 and CD16.

M

Multidisciplinary Team (MDT)

A group of professionals from different specialties working together.

M

Multi-Omics

The combined study of different biological layers such as genes, proteins and metabolites.

N

Neutropenia

Low levels of a specific type of white blood cell.

O

Observational Study

A study observing patients without assigning treatment.

O

Outcome

A measurable result used to evaluate treatment success.

P

Patient and Public Involvement (PPI)

Research carried out with or by patients and the public, rather than to, about or for them.

P

Patient Journey

The full experience of a patient across the healthcare system — from first symptoms and diagnosis through treatment decisions, monitoring and long-term care. Mapping the patient journey helps identify gaps, delays or burdens in care.

P

Patient-Reported Outcome (PRO)

Information directly reported by patients about their symptoms or quality of life.

P

Patient Research Partner (PRP)

A person living with a disease collaborating as an equal member of the research team.

P

Personalised / Precision Medicine

Tailoring treatment based on individual characteristics.

P

Phenotype

Observable disease characteristics (symptoms, lab results, imaging findings).

P

Placebo

An inactive treatment used for comparison in clinical trials.

P

Polypharmacy

Taking multiple medications simultaneously.

P

Predictive Model

A computational tool that estimates the probability of future outcomes based on patient data. Prediction indicates likelihood, not certainty.

P

Proteomics

The study of proteins in the body.

Q

QALY (Quality-Adjusted Life Year)

A measure combining life length and quality of life.

Q

Quality of Life (QoL)

How health affects daily living, wellbeing and independence.

Q

Quantitative Sensory Testing (QST)

Studies how the nerve endings are working. It is helpful for problems such as numbness, pain, and tingling.

Q

Questionnaire

A structured set of questions used to measure specific aspects of health (for example pain, fatigue or quality of life). It produces a score that helps researchers assess outcomes.

R

Randomisation

Assigning participants to study groups by chance.

R

Real-World Data

Health information collected outside clinical trials.

R

Registry

A structured database collecting patient information over time.

R

Remission

Very low or no disease activity.

R

RF positivity

When a Rheumatoid Factor test finds higher than normal levels of a protein in the blood called Rheumatoid factor (RF). This protein made by the immune system can mistakenly attack healthy tissues. RF positivity is often linked to autoimmune diseases such as rheumatoid arthritis. However, it’s not a perfect indicator: some healthy people can test positive, and some people with autoimmune diseases can have normal (negative) RF levels.

R

Rheumatoid Arthritis (RA)

A chronic autoimmune disease causing joint inflammation.

An indicator that the project was funded by the european unionAn indicator that the project was funded by the swiss confederation