Glossary

refers to a condition that progresses rapidly and has brief duration.

A sticking together of substances.²

Located on the top of each kidney and are responsible for releasing different classes of hormones. Hormones released from the kidney control many important functions in the body, including managing blood sugar levels, regulating inflammation, regulating the balance of salt and water, controlling the “fight or flight” response to stress, maintaining pregnancy, and initiating and controlling sexual maturation during childhood and puberty. The adrenal glands are also an important source of sex steroids, such as estrogen and testosterone.¹

A harmful and negative outcome that happens when a patient has been provided with medical care.¹

When something from another person, like blood, tissues, cells, or organs, is used in a treatment or procedure (e.g. transplantation). ² 

A disease that causes hair loss.¹

A non-profit organization that is committed to advancing rheumatology through their commitment to education, research, advocacy, and practice support. To learn more, visit https://rheumatology.org/ (See rheumatology)

A medicine that reduces or relieves headaches, sore muscles, arthritis, or other aches and pains.³

Occurs when your blood does not carry enough oxygen to the rest of the rest of your body. The most common cause of anemia is not having enough iron. Your body needs iron to make hemoglobin. Hemoglobin is an iron-rich protein that gives the red color to blood. It carries oxygen from the lungs to the rest of the body.³ 

A treatment for systemic lupus erythematosus which works by inhibiting a key protein in the immune system called the IFNAR receptor. This protein acts like a transmitter, amplifying signals from tiny messengers called type I interferons. This activates many parts of the immune system and can trigger major inflammation. For more information, visit What You Need to Know About Saphnelo.

A type of arthritis that causes inflammation in certain parts of the spine.¹

Drugs used for the treatment of malaria which are also widely used in the management of lupus symptoms.

A class of drugs that block the action of tumor necrosis factor (TNF); used in cases of rheumatoid arthritis because TNF instigates inflammation of the joints.

Reducing or counteracting inflammation; can also refer to a drug that reduces inflammation.²

A protein made by the body’s immune system that circulates in the blood, recognizes foreign substances like bacteria and viruses, and defends the body against them.¹

An antibody associated with increased risk for recurring thromboses.² (See antibodies) (See thrombosis)

Blood thinner²

Any substance foreign to the body that evokes an immune response.²

An antibody that binds to the nuclei of the body’s own cells. Nearly all SLE patients have this antibody. However, it can be found in healthy people and in most people with autoimmune disease.

An autoimmune disorder caused when antibodies—immune system cells that fight off bacteria and viruses—mistakenly attack healthy body tissues and organs.¹(See autoimmune disease)

A feeling of worry, nervousness, or fear about an event or situation.¹

In the U.S., the Food and Drug Administration (FDA) must approve a substance as a drug before it can be marketed. The approval process involves several steps including pre-clinical laboratory and animal studies, clinical trials for safety and efficacy, filing of a New Drug Application by the manufacturer of the drug, FDA review of the application, and FDA approval/rejection of application.

Any of the treatment groups in a randomized trial. Most randomized trials have two "arms," but some have three "arms," or even more.

Joint pain¹

Literally means joint inflammation. Although joint inflammation is a symptom or sign rather than a specific diagnosis, the term arthritis is often used to refer to any disorder that affects the joints. Joints are places where two bones meet, such as your elbow or knee.¹

The operative formation or restoration of a joint.²

Of or relating to a joint.² 

The capability of computer systems or calculations to imitate intelligent human behavior. ² 

A disease in which plaque builds up inside your arteries. Plaque is a sticky substance made up of fat, cholesterol, calcium, and other substances found in the blood. Over time, plaque hardens and narrows your arteries. That limits the flow of oxygen-rich blood to your body.³

A misdirected immune response that occurs when the immune system goes awry and remains in a state of hyperactivity even after the infections or stimulus for the response has been resolved.

An antibody that attacks the body’s own tissues.

A type of disease in which the immune system malfunctions and mistakenly attacks healthy cells, tissues, and organs. These attacks can affect any part of the body, weakening bodily function and even become life-threatening.¹

A term used in medicine to describe when something from your own body—like blood, skin, or stem cells—is used for a treatment or procedure. ² 

Produced by an organism and acting against its own cells or tissues.²

A type of white blood cell that is part of the immune system. They produce antibodies, which are used to attack invading bacteria, viruses, and toxins.¹

A useful measure of overweight and obesity. It is calculated using your your height and weight.¹

Any one of a group of very small living things that often cause disease.²

When a provider bills you for the difference between the provider’s charge and the amount allowed by your health plan. For example, if the charge is $100 and the allowed amount is $70, the provider may bill you for the remaining $30.² 

A set of critical observations or data used for comparison or a control.²

Benlysta is a human monoclonal antibody that was approved for the treatment of lupus by the U.S. Food and Drug Administration (FDA) on March 9, 2011 and for lupus nephritis on December 17, 2020. Benlysta was also approved by the FDA to treat lupus in children and teens (5 to 17) in 2019 and for treatment of lupus nephritis in the age group in 2022. A monoclonal antibody is a type of protein made in the laboratory that is developed to find and attach to only one type of substance in the body. For more information, visit What You Need to Know About Benlysta.

Deviation from the truth in data collection, analysis, interpretation and publication.¹

Biologics are a newer category of therapy in which therapy is directed toward neutralizing proteins in the body that are causing inflammation. Some are administered via intravenous (IV) infusions and others are injections you give yourself.⁴ Examples of biologics used for lupus treatment include Benlysta (belimumab), Rituxan (rituximab), and Saphnelo (anifrolumab).

A series of actions among molecules in a cell that leads to a certain product or a change in the cell. It can trigger the assembly of new molecules, such as a fat or protein, turn genes on and off, or spur a cell to move.¹

A class of drugs indicated for the treatment of inflammatory arthritides and connective tissue diseases. bDMARDs are immunosuppressive and immunomodulatory agents, examples of which include infliximab, adalimumab, etanercept, rituximab, abatacept, rituximab, tocilizumab, tofacitinib, among others.¹

Short for biological marker; an objective measure that captures what is happening in a cell or an organism at a given moment.¹

A procedure that removes cells or tissue (including blood) from the body in order to test cells or tissue under a microscope to check for damage or disease. ³ 

A biological product that is highly comparable, but not identical, to a biologic medication already approved by the Food and Drug Administration (FDA), also called a reference product. Biosimilars have no clinically meaningful difference from the reference product.¹  (See biologic)

Without knowledge of certain facts that could serve for guidance or cause bias (see Bias).¹

A group of tests that measures different chemicals in the blood. The tests can give doctors information about your muscles (including the heart), bones, and organs, such as the kidneys and liver.

The concentration of nitrogen in the form of urea in the blood.²

A term used to describe mild memory loss that may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty processing information.³ 

For more information, visit Lupus and Brain Fog

A bodily pouch or sac, located between a tendon and a bone.²

An erythematous (red), flat facial rash that affects the skin in the malar area (over the cheekbones) and extends over the bridge of the nose.¹

Chimeric antigen receptor T cell therapy (CAR-T cell therapy) introduces a receptor gene to a person’s T cells, a type of immune cell. This gene provides instructions for making a protein, called the chimeric antigen receptor (CAR), that attaches to specific antigens or markers on other cells in the body. In lupus, the specific genetically engineered T cell can attack B cell markers that then leads to B cell depletion.³ (See T cells; see B Cells; see gene)

The Consolidated Omnibus Reconciliation Act (COBRA) is a federal law that may allow you to temporarily keep health coverage after your employment ends and you lose coverage from employee-sponsored insurance.⁵ 

Learn more about COBRA at https://www.healthcare.gov/unemployed/cobra-coverage/

Coronavirus disease 2019 (COVID-19) is an illness caused by a virus. This virus is a new coronavirus that has spread throughout the world. It is thought to spread mainly through close contact from person to person.³

A class of immunosuppressants utilized to manage various autoimmune disorders, including lupus nephritis. They also serve as essential components for immunosuppression in organ transplantation.¹  (See autoimmune disease(s)) 

The study of the heart and its action and diseases.²

Of, relating to, or involving the heart and blood vessels.²

Inflammation of the heart or its surroundings.¹

Either of the two main arteries that supply blood to the head.²

A strong but flexible material found in some parts of the body (such as the nose, the outer ear, and some joints).²

The basic building block of living things.¹

The sum of all chemical changes that take place in a cell through which energy and basic components are provided for essential processes, including the synthesis of new molecules and the breakdown and removal of others.¹

The part of the nervous system which in vertebrates consists of the brain and spinal cord, to which sensory impulses are transmitted and from which motor impulses pass out, and which coordinates the activity of the entire nervous system.²

Inflammation of the cerebrum (the enlarged front and upper part of the brain that is the center of thinking).²

Strokes and other brain and blood vessel conditions.⁴

Thread-like structures located inside animal and plant cells, made of protein and a single molecule of deoxyribonucleic acid (DNA).¹

Refers to a condition that progresses slowly and has a long duration.

A serious, long-term illness that affects many body systems. Another name for it is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). CFS can often make you unable to do your usual activities. Sometimes you may not even be able to get out of bed.³

Pain that may last for weeks, months, or even years. The original cause may have been an injury or infection. There may be an ongoing cause of pain, such as arthritis or cancer. In some cases, there is no clear cause.³

Pertaining to or founded on observation and treatment of participants, as distinguished from theoretical or basic science.

A scientifically controlled study of the safety and effectiveness of a therapeutic agent (such as a drug or vaccine) using consenting human subject.²

A person, company, institution, group, or organization that oversees or pays for a clinical trial and collects and analyzes the data. Also called trial sponsor.¹

Cognitive mental processes (See cognitive). ²

Of, relating to, being, or involving conscious intellectual activity (as thinking, reasoning, or remembering).²

In epidemiology, a group of individuals with some characteristics in common and followed over a period of time.¹

With coinsurance, you and your insurance provider split the cost of a health care service that is covered by your health plan. You pay a percentage of the cost, and your insurance pays the rest.⁵ 

Two or more disorders or illnesses occurring in the same person. They can occur at the same time or one after the other. Comorbidity also implies interactions between the illnesses that can worsen the course of both.¹

Proteins in normal blood that, in combination with antibodies, causes the destruction of certain antigens (such as bacteria and other foreign invaders) (See Antibody).²

Broad range of healing philosophies, approaches, and therapies that Western (conventional) medicine does not commonly use to promote well-being or treat health conditions. Examples include acupuncture, herbs, etc.

Common blood test often performed as part of a routine checkup. The CBC can help detect blood diseases and disorders, such as anemia, infections, clotting problems, blood cancers, and immune system disorders.¹

A rare condition that affects the heart's electrical system, which controls and coordinates its pumping function. This can interfere with the heart's normal rate and rhythm and may significantly limit the ability of the heart to pump blood to the rest of the body.¹

Tissue that binds structures together, form a framework and support for organs and the body as a whole, store fat, transport substances, protect against disease, and help repair tissue damage. They occur throughout the body.¹

A situation in which a medication, procedure or surgery is harmful or inadvisable to a person. For example, some medications should not be taken together as they would cause unwanted and dangerous reactions. ³ 

An experiment in which the subjects are treated as in a parallel experiment except for omission of the procedure or agent under test and which is used as a standard of comparison in judging experimental effects.²

The standard by which experimental observations are evaluated. In many clinical trials, one group of patients will be given an experimental drug or treatment, while the control group is given either a standard treatment for the illness or a placebo.

A clinical study that includes a comparison (control) group. The comparison group receives a placebo, another treatment, or no treatment at all.¹

A fixed amount you have to pay for a health care service that is covered by your health insurance plan after you have paid or met your deductible.⁵  (See deductible)

The most common type of heart disease. It is the leading cause of death in the United States in both men and women. CAD happens when the arteries that supply blood to heart muscle become hardened and narrowed. This is due to the buildup of cholesterol and other material, called plaque, on their inner walls.³

A medication derived from the natural hormone cortisone, produced by the cortex of the adrenal glands, that reduces inflammation and swelling. Corticosteroids are not the same as "anabolic steroids" (performance enhancing drugs being used and abused in sports) and are used to treat a variety of health problems.³

Disease of skin in someone with lupus.¹

Drug used to treat different types of cancer and is also used for some kinds of kidney disease. Cyclophosphamide interferes with the growth of cancer cells, which are then destroyed by the body.⁴

Any class of immunoregulatory proteins that are secreted by cells, particularly those secreted from the immune system.²  (See immune system; immunoregulatory)

Damage refers to organ damage due to disease activity. It is principally assessed using the Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI), which measures irreversible damage that has occurred after the diagnosis of lupus and predicts future mortality.¹ 

The amount you pay on your own or out of your pocket before your insurance company starts to pay your medical costs.⁵ 

A shortage or lack of substances necessary to good health. ² 

A serious medical illness and disorder of the brain. Feelings persist and interfere with everyday life, more than just a feeling of being sad or "blue" for a few days.³

A branch of medicine dealing with the skin, its structure, functions, and diseases.²

One of a group of muscle diseases known as the inflammatory myopathies, which are characterized by chronic muscle inflammation accompanied by muscle weakness. (See myopathies)¹

Detects or confirms the presence of a disease or condition of interest, or identifies an individual with a subtype of the disease.¹

A blood filtration process to rid the body of harmful wastes, extra salt, and water, typically performed in patients with compromised kidney function. ³ 

A type of lupus that causes a red rash that doesn’t go away.³

An agent that increases the excretion of urine.²

A study in which neither the participating individuals nor the study staff knows which medicine is being used, so they can describe what happens without bias.¹

Lupus triggered by certain types of blood pressure medications, anti-seizure medications and antibiotics. People who have drug-induced lupus usually get better when they stop taking the medication. Rarely, symptoms may persist even after the drug is stopped.⁴

A phase of research used to describe exploratory trials conducted before traditional phase 1 trials to investigate how or whether a drug affects the body. They involve very limited human exposure to the drug and have no therapeutic or diagnostic goals.¹

(Of a drug or treatment). The maximum ability of a drug or treatment to produce a result regardless of dosage. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed. In the procedure mandated by the FDA, Phase II clinical trials gauge efficacy, and Phase III trials confirm it.

A digital version of a patient’s medical history. The EHR is maintained by the provider over time and includes all of a patient’s key administrative clinical data relevant to that person’s care, including demographics, progress notes, problems, medications, vital signs, past medical history, immunizations, laboratory data and radiology reports. Also called an Electronic Medical Record.⁵ 

Based on experimental data, not on a theory.

A point marking the completion of a process or stage of a process.²

A medical condition in which a person's kidneys cease functioning on a permanent basis leading to the need for a regular course of long-term dialysis or a kidney transplant to maintain life.⁵

Factors affecting health which are external to the body such as sunlight, mold, and pollutants, or internal such as diet choices, metabolism, and stress.¹ 

The branch of medical science that investigates all the factors that determine the presence or absence of diseases and disorders.¹

An organization which represents people with rheumatic and musculoskeletal diseases, health professionals in rheumatology, and scientific societies of rheumatology across all European nations. To learn more, visit https://www.eular.org/ (See musculoskeletal, see rheumatism).

Exclusion criteria features of the potential study participants who meet the inclusion criteria but present with additional characteristics that could interfere with the success of the study or increase their risk for an unfavorable outcome. Common exclusion criteria include characteristics of eligible individuals that make them highly likely to be lost to follow-up, miss scheduled appointments to collect data, provide inaccurate data, have comorbidities that could bias the results of the study, or increase their risk for adverse events (most relevant in studies testing interventions).¹

A feeling of weariness, tiredness, or lack of energy.³

A chronic condition that causes pain all over the body, fatigue, and other symptoms.³

A sudden appearance or worsening of the symptoms of a disease or condition.²

Also known as a drug list; A list of prescription medicines covered by a health insurance plan.

(Learn more with our health insurance guide).

Of, or relating to, or affecting both stomach and intestine.²

The basic physical unit of inheritance; passed from parents to offspring and contain the information needed to specify traits.¹

The process by which the information encoded in a gene is used to direct the assembly of a protein molecule.¹

The process of turning genes on and off.¹

A disease caused in whole or in part by a change (mutation) in the DNA sequence away from the normal sequence.¹

The study of genes and the way that certain traits or conditions are passed down from one generation to another.¹

A class of steroid hormones characterized by an ability to bind with the cortisol receptor and trigger similar effects. The term corticosteroid often is used as a synonym for glucocorticoid.

The ability for an individual to obtain, use, and understand health information to make health-related decisions for themselves and others. ¹ 

A multi-dimensional concept commonly used to examine the impact of health status on quality of life. This represents the person’s general perception on the effect of the illness and treatment on physical, psychological, and social aspects of their life.¹ 

A problem with the rate or rhythm of the heartbeat.¹

Happens when the flow of oxygen-rich blood to a section of heart muscle suddenly becomes blocked and the heart can’t get oxygen.¹

Disorders of the blood and blood-forming organs.¹

Relating to blood or hematology, the study of blood and blood disorders.² 

The quality of being diverse and not comparable in kind.

A medical condition wherein the blood pressure is chronically elevated.

A supposition or assumption advanced as a basis for reasoning or argument, or as a guide to experimental investigation.

A class of immunoglobulins (antibodies) circulating in the blood that facilitate the destruction of microorganisms foreign to the body (See antibodies).²

A class of immunoglobulins (antibodies) that includes the primary antibodies released into the blood early in the immune response and that are highly efficient in binding complement. (See antibodies) (See complement)²

Molecular complexes formed in the blood by combination of an antigen and an antibody that tend to accumulate in bodily tissue and are associated with various diseases or disorders (See antigen) (See antibodies).²

A bodily response that occurs when lymphocytes (immune-system cells) identify the antigen-like molecule as foreign and create antibodies and lymphocytes capable of rendering it harmless (See antigen) (See antibodies).²

The system that protects your body from diseases and infections.²

Of or relating to the regulation of the immune system.²  (See immune system)

Causing or characterized by immunosuppression (the suppression of the immune system as by drugs or disease).²

Insurance companies have contracts with certain doctors and health care organizations. These doctors and health care organizations are considered in the health plan’s network and have a signed agreement in place to accept the insurance company’s negotiated prices. To find out if a doctor or organization is considered in a plan’s network, call your insurance company or check your plan’s directory of providers online.⁵ 

The rate of occurrence of new cases of a disease in a population group over a period of time.¹ 

A bodily response to injury or disease in which heat, redness, and swelling are present²

Immunity possessed by a group (as a species or race) that is present in an individual at birth (See immunity/immune system).²

The inability of an organ or body part to function normally.² 

Any of a group of heat-stable soluble basic antiviral glycoprotein cytokines of low molecular weight that are produced by cells exposed usually to the action of a virus, sometimes to the action of another intracellular parasite (such as a bacterium), or experimentally to the action of some chemicals (See cytokines).²

One of a group of related proteins made by white blood cells (leukocytes) and other cells in the body. It increases the growth and activity of B cells and T cells (lymphocytes) in the body and affects the development of the immune system.¹  (See B cells; see T cells).

Types of interventions are Drug, Gene Transfer, Vaccine, Behavior, Device, or Procedure.

Used in or using intravenous procedures²

A drug that has not been approved for general use by the Food and Drug Administration but is under investigation in clinical trials regarding its safety and effectiveness first by clinical investigators and then by practicing physicians using patients who have given informed consent to participate (See clinical trial).²

The group in a clinical research study that receives the drug, vaccine, or other intervention being tested. Interventions may also include medical procedures (such as radiation therapy and surgery), medical devices, behavior changes (such as diet and exercise), education programs, and counseling. Also called experimental group and intervention group (See intervention).¹

A monoclonal antibody for treatment of lupus nephritis, currently in clinical trial stage (See monoclonal antibodies).

The most common type of arthritis in children under the age of 16; occurs when the body's immune system attacks its own cells and tissues (See arthritis).⁴

Either of two organs in your body that remove waste products from your blood and make urine.²

Almost any abnormality involving any tissue or organ due to any disease or any injury. There are many types of lesions and many ways to classify lesions (e.g., a benign lesion is non-cancerous whereas a malignant lesion is cancerous).

A decrease in the number of circulating white blood cells (leukocytes) in the blood. As the principal function of white cells is to combat infection, a decrease in the number of these cells can place patients at increased risk for infection.

Any one of many rounded masses of tissue in the body through which lymph passes to be filtered and cleaned. Lymph is a pale fluid that contains white blood cells and that passes through channels in the body and helps to keep bodily tissues healthy.²

B cells and T cells. The T cells destroy the body's own cells that have themselves been taken over by viruses or become cancerous.¹

In machine learning, computer systems automatically learn from experience without being explicitly programmed. A computer program analyzes data to look for patterns in large sets of data and makes predictions based on the data set and statistical models. Machine learning helps advance, and often speeds up, scientific research.¹

Cell of the immune system that functions in the destruction of foreign antigens (such as bacteria and viruses).²

An erythematous (red), flat facial rash that affects the skin in the malar area (over the cheekbones) and extends over the bridge of the nose.¹

Perceptible, outward or visible expressions (as of a disease or abnormal condition).² 

A joint federal and state program available for people and families with low income and people with a disability, including disabilities caused by lupus.²  

Learn more about Medicaid at https://www.Medicaid.gov

A federal program (run by the U.S. government) that provides health insurance for people who are 65 years and older or have a disability, including people who may have disabilities from lupus.³  

Learn more about Medicare at https://www.Medicare.gov

A group of risk factors that raise risk for heart disease and other health problems (See heart disease).¹

The chemical processes by which a plant or an animal uses food, water, etc., to grow and heal and to make energy.²

A community of microorganisms (such as bacteria, fungi, and viruses) that inhabit a particular environment and especially the collection of microorganisms living in or on the human body.²

Systemic lupus erythematosus, scleroderma, and polymyositis. (See autoimmune disorders) (See systemic lupus erythematosus) (See scleroderma).¹

Antibodies that derived from the clone of a single B cell and that is produced in large quantities of identical cells that act against the same antigen (as a cancer cell) (See antibody) (See antigen) (See B cells)²

Made up of or involving both skin and mucous membrane.²

Of, relating to, or involving both musculature and skeleton.²

An immunosuppressive drug that is used after an organ transplant or in autoimmune disease to reduce the activity of the patient’s immune system and reduce the risk of rejection and/or damage. The drug specifically reduces the new production of DNA in lymphocytes which limits their ability to multiply and develop, ultimately reducing the immune response. (See immunosuppressive)^1 4 

Cells produced in bone marrow.³

Also known as a heart attack; happens when blood flow to the heart suddenly becomes blocked.¹

Study of the natural development of something (such as an organism or a disease) over a period of time.

Relating to or affecting the infant during the first month after birth.

Neonatal lupus is not true lupus. It is a rare condition associated with anti-SSA/Ro and/or anti-SSB/La antibodies from the mother that affect the fetus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but these symptoms typically disappear completely after six months with no lasting effects. For more information, visit What is Neonatal Lupus?

An inflammation of the kidney. See also: What is lupus nephritis?

One who specializes in the branch of medicine concerned with the kidney.²

A branch of medicine concerned with the kidneys.²

The system of nerves in your body that sends messages for controlling movement and feeling between the brain and the other parts of the body.¹

One who specializes in the branch of medicine concerned especially with the structure, function, and diseases of the nervous system.²

A branch of medicine concerned especially with the structure, function, and diseases of the nervous system.²

Related to a branch of medicine concerned with both neurology and psychiatry.

Cells regarded as the first line of defense in the innate arm of the immune system. (See immune system)¹

An application submitted by the manufacturer of a drug to the FDA - after clinical trials have been completed - for a license to market the drug for a specified indication.

A nonsteroidal anti-inflammatory drug (such as aspirin and ibuprofen). ² (See anti-inflammatory)

A type of study in which individuals are observed or certain outcomes are measured. ¹

Of, relating to, or being a drug used to treat a condition for which it has not been officially approved by the FDA to specifically treat the condition. ²

A branch of medicine concerned with the prevention, diagnosis, treatment and study of cancer. ²

The researcher and the participant in a research study know the treatment the participant is receiving. ²

being or relating to a clinical trial in which the treatment given to each subject is not concealed from either the researchers or the subject.² (See clinical trial)

A physician who specializes in ophthalmology, a branch of medicine that deals with the diagnosis and treatment of disorders of the eye.²

Osteoarthritis is the most common form of arthritis. It causes pain, swelling, and reduced motion in your joints. It can occur in any joint, but usually it affects your hands, knees, hips or spine.³ (See arthritis)

Osteoporosis is a disease that thins and weakens the bones. Your bones become fragile and fracture (break) easily, especially the bones in the hip, spine, and wrist.³

When an insurance company does not have a contract with a doctor or health care organization and they are considered out of the health plan’s network. This means that they do not have a signed agreement in place to accept the insurance company’s negotiated prices, so they can charge you the full price.⁵ 

The development of a disease. The origin of a disease and the chain of events leading to that disease.

A physician who specializes in interpreting and diagnosing the changes caused by disease in tissues and body fluids.² 

A physician who specializes in interpreting and diagnosing the changes caused by disease in tissues and body fluids.² 

The study of the essential nature of diseases and especially of the structural and functional changes produced by them.²

A branch of medicine dealing with the development, care, and diseases of infants, children, and adolescents.²

A process of subjecting an author’s scholarly work, research or ideas to the scrutiny of others who are experts in the same field.¹

The accumulation of fluid in the area surrounding the heart.¹

Inflammation of the area surrounding the heart.²

The study of how a drug moves into, through and out of the body, looking at absorption, distribution, metabolism and excretion. Understanding this process is important for drug development and proper dose administration. ¹ 

A research study in which an experimental drug or treatment is tested in a small group of people (20-80) for the first time. The purpose is to evaluate its safety and identify side effects. ¹

A research study in which the experimental drug or treatment is administered to a larger group of people (100–300) to determine its effectiveness and to further evaluate its safety. ¹

A research study in which the experimental drug or treatment is administered to large groups of people (1,000–3,000) to confirm its effectiveness, monitor side effects, compare it with standard or equivalent treatments. ¹

A research study conducted after a drug is licensed and approved by the FDA; researchers track its safety, seeking more information about its risks, benefits, and optimal use. ¹

An individual's observable traits, such as height, eye color, and blood type¹

An immunological response to light, usually sunlight. Photosensitive individuals typically break out in a rash when exposed to sunlight; how much exposure it takes to cause a reaction varies from person to person.

A placebo is an inactive pill, liquid, or powder that has no treatment value. In clinical trials, experimental treatments are often compared with placebos to assess the treatment's effectiveness.

A method of investigation of drugs in which an inactive substance (the placebo) is given to one group of participants, while the drug being tested is given to another group. The results obtained in the two groups are then compared to see if the investigational treatment is more effective in treating the condition.

A physical or emotional change, occurring after a substance is taken or administered, that is not the result of any special property of the substance. The change may be beneficial, reflecting the expectations of the participant and, often, the expectations of the person giving the substance.

A localized abnormal patch on a body part or surface.

A common brand name for hydroxychloroquine. Hydroxychloroquine belongs to the family of medicines called “antimalarials” (AMs), which are also classified as disease-modifying anti-rheumatic drugs, or DMARDs. These drugs were initially used to prevent and to treat malaria but are no longer used for those purposes; more effective drugs have since been developed. In 1956, the U.S. Food and Drug Administration approved hydroxychloroquine for symptoms of lupus and rheumatoid arthritis, particularly skin inflammation, hair loss, mouth sores, fatigue, and joint pain. For more information on hydroxychloroquine, visit: Hydroxychloroquine (Plaquenil): Benefits, Side Effects, and Dosing .

Also known as blood plasma, serves as the liquid portion of blood and serves many functions in the body. Plasma plays an important role in transporting blood cells, nutrients, proteins, waste products and hormones throughout the body, in addition to helping with immunity, blood clotting, maintaining blood pressure and pH balance. (See also immune system/immunity)

A small, round, thin blood cell that helps blood to stop flowing from a cut by becoming thick and sticky²

Specialized cells in the kidneys that play an active role in blood filtration to prevent plasma from entering the urinary tract.¹ 

A study of a group of individuals taken from the general population who share a common characteristic, such as age, sex, or health condition. This group may be studied for different reasons, such as their response to a drug or risk of getting a disease.¹

An elevation in blood pressure in a pregnant woman of 140/90, with protein in the urine, or swelling (edema) of the feet, hands, and/or face.

Refers to the testing of experimental drugs in the test tube or in animals - the testing that occurs before trials in humans may be carried out.

A substance, cell, or cellular component which is formed from another substance, cell, or cellular component.²  (See cell)

Prednisone is a synthetic, anti-inflammatory glucocorticoid that derives from cortisone to treat inflammation.¹ (See anti-inflammatory) (See inflammation) (See glucocorticoid)

The regular, monthly payment amount to a health insurance company.⁵ 

The number of people in a population group who have a disease or condition in a specific period of time.¹

An objective tool used to measure how beneficial a medical intervention is to a patient’s feeling, function, and survival.¹ (See interventions)

A doctor who leads the clinical research team and, along with the other members of the research team, regularly monitors study participants’ health to determine the study’s safety and effectiveness.¹

The prospect of recovery as anticipated from the usual course of disease²

A broad term used to describe protein in the urine. Persistent proteinuria is a marker of kidney damage.¹ 

A carefully designed plan to safeguard the research participants’ health and answer specific research questions.¹

Of, relating to, affecting, or occurring in the lungs²

Occurs when the pressure in the blood vessels that carry blood from your heart to your lungs is higher than normal¹

Refers to trials that explore ways to improve comfort and quality of life for individuals with a chronic illness.

A clinical trial in which the subjects are randomly distributed into groups which are either subjected to the experimental procedure (as use of a drug) or which serve as controls² (See clinical trial)

A condition that affects your blood vessels. If you have Raynaud’s phenomenon, you have periods of time called “attacks” when your body does not send enough blood to the hands and feet. During an attack, your fingers and toes may feel very cold or numb and change color (usually to white or blue). ¹

Resistant to treatment or cure²

A period of time during a serious illness when there are few or no symptoms.²

Of, relating to, involving, or located in the region of the kidneys.²

A disease that causes stiffness and pain in the muscles and swelling and pain in the joints.²

A form of arthritis that causes pain, swelling, stiffness and loss of function in your joints. 3 (See arthritis)

One who specializes in rheumatology2 (See rheumatology)

A medical science dealing with rheumatic diseases.²

A genetically engineered monoclonal antibody that is administered by intravenous injection2 (See monoclonal antibodies) (See intravenous)

An autoimmune disorder that may involve changes in the skin, blood vessels, muscles, and internal organs.¹ (See autoimmune disease)

An abnormal state in which you become unconscious and your body moves in an uncontrolled and violent way²

An individual’s judgment of their ability to successfully perform a behavior.¹ 

Any event that is life threatening or results in death¹

A field of medical science which deals with blood serum in regard to immunological reactions and properties.² 

An often harmful and unwanted effect of a drug or chemical that occurs along with the desired effect²

A study in which one party, either the investigator or participant, does not know which medicine is being used, so they can describe what happens without bias; also called single-masked study.¹

An autoimmune disorder in which immune cells attack and destroy the glands that produce tears and saliva (See autoimmune disease)¹

Social determinants of health including income inequality, low socioeconomic status and poorer physical and social environments, are social determinants that negatively impact health, especially amongst certain community groups. Social determinants are considered avoidable, unfair and remediable causes of health disparities and affect health, functioning and quality of life.¹

The degree of care or competence that one is expected to exercise in a particular circumstance or role.²

The probability that an event or difference occurred by chance alone. In clinical trials, the level of statistical significance depends on the number of participants studied and the observations made, as well as the magnitude of differences observed.¹

Corticosteroid drugs, called "steroids" for short; see Corticosteroid for the definition.

The fatty layer of tissue just under the skin and before the muscle. Drug treatments are administered here through a short needle injection which allows for slower absorption by the body than if injected into a vein.¹ 

Affecting the entire body.²

A chronic, inflammatory, variable autoimmune disease of connective tissue that occurs chiefly in women and is typically characterized by fever, skin rash, fatigue, and joint pain and often by disorders of the blood, kidneys, heart, lungs, and brain² (See autoimmune disease)

An international group of rheumatologists and immunologists with special interest in lupus. SLICC developed the Damage Index, the only internationally accepted way of measuring the long-term effects of lupus and its treatment on the body. To learn more, visit https://sliccgroup.org

A type of white blood cell that is part of the immune system. T cells destroy the body’s own cells that have themselves been taken over by viruses or become cancerous.¹

An immunosuppressive drug whose main use is after organ transplant to reduce the activity of the patient's immune system and so the risk of organ rejection.¹

The formation of a blood clot inside a blood vessel that obstructs the natural flow of blood through the circulatory system.¹

The capacity of the body to endure or become less responsive to a substance (as a drug) or a physiological insult especially with repeated use or exposure²

An adverse effect produced by a drug that is detrimental to the participant's health. The level of toxicity associated with a drug will vary depending on the condition which the drug is used to treat.

Refers to trials which test new treatments, new combinations of drugs, or new approaches to surgery or radiation therapy.¹

Fat particles, called lipids, that circulate in the blood to support the structure of the cells and metabolism. The body needs some triglycerides for good health, but high levels of triglycerides in the blood can raise risk of heart disease and stroke.¹ 

An amino acid¹

A painful, sore area inside or outside the body²

A clinical study that lacks a comparison (i.e., a control) group.¹

To make evident; emphasize, stress²

An autoimmune disease that can affect several systems in the body.

A test of your urine.²

Inflammation of the blood vessels.³

Lupkynis is a drug developed to treat lupus nephritis, a lupus-related kidney disease caused by inflammation. It is taken as a pill in combination with standard of care therapies and works by suppressing the immune system. The FDA approved voclosporin for the treatment of lupus nephritis in the U.S. on January 22, 2021. For more information, visit: Lupkynis™ (voclosporin): What you need to know

A clear or colorless cell in the blood that protects the body from disease.²