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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.

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External Stakeholders

People or groups who are affected by or have an interest in a project or organisation but are not directly part of it. They may influence or be influenced by its outcomes. Examples include patients, patient advocacy groups, funders, regulatory bodies, or partner organisations.

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Internal Stakeholders

People or groups who are directly involved in or part of an organisation or project. They have a direct role in decision-making, operations, or outcomes. Examples include team members, researchers, managers, and employees.

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Safety Monitoring

Ongoing assessment of treatment risks.

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Sensitivity

The ability of the test to identify the presence of a disease correctly.

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Serious Adverse Event (SAE)

A severe or life-threatening medical problem during a study.

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Shared Decision-Making (SDM)

A collaborative process in which clinicians and patients make healthcare decisions together, integrating clinical evidence and patient preferences.

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Skewness

On a graph, the way data is distributed may or may not be symmetric. When one side of the graph stretches further from the centre than the other, this asymmetry is called a skew.

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Social pain profiling

A process of identifying how a person’s social experiences affect their emotional well-being and their experience of physical pain. Examples of social experiences include support from family or friends, difficulties at work, or challenges in daily roles. Profiling social situations that increase stress, loneliness, or feelings of being unsupported allows healthcare teams to better tailor support, strengthen helpful social connections, and reduce the impact of social stress on pain.

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Specificity

The ability of the test to identify the absence of a disease or illness correctly.

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Stakeholders

Individuals or groups who influence or are affected by a project.

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Stratification

Grouping patients based on shared characteristics.

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Swollen Joint Count (SJC)

Number of swollen joints.

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Systems Biology

Studying how different biological systems interact together.

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Targeted Synthetic DMARDs (tsDMARDs)

Chemically produced drugs that target specific molecules involved in inflammation (for example JAK inhibitors).

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T-Cell Costimulation Blockers

Prevent certain immune cells from becoming fully activated.

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T-cell(s)

A cell belonging to the immune system. Also called “T-lymphocyte”.

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Tender Joint Count (TJC)

Number of painful joints.

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TNF Inhibitors

Block a protein called tumour necrosis factor (TNF), which drives inflammation.

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Transaminases (ALT/AST)

Blood tests measuring liver health.

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Translational Research

Moving discoveries from laboratory research into patient care.

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Treatment Failure (Primary vs Secondary)

Primary: lack of response to initial therapy. Secondary: loss of response after an initial successful treatment.

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Ultrasonography (ultrasound)

A type of radiation-free imaging that uses high sound waves to see soft tissue, organs, and blood flow inside your body.

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Validation Study

Research confirming that a tool or test works accurately in different patient groups.

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Value-Based Healthcare

A healthcare approach that emphasizes maximizing patient outcomes relative to costs, focusing on effective and efficient care.

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Work Package (WP)

A defined group of related tasks within a large research project. Each work package focuses on a specific objective (for example: data collection, AI development, clinical validation, patient involvement).

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