Glossary

Acute HIV infection: (Also known as “primary HIV infection” ). The period of time right after someone first gets HIV, when HIV is making copies of itself very quickly and the amount of virus in their body is increasing (this is known as “rapid HIV replication”). 

Adherence: Taking the correct dose of a medicine at the correct time(s), the way a health care provider prescribed it.

Example: She was happy her viral load was so low at this medical visit because her doctor had talked to her at length about her adherence at the last visit.

Adverse event (AE): (also known as side effect or adverse reaction): When a medicine causes an unwanted symptom or medical problem. 

Example: The doctor was required to report the rash as an adverse event even though it wasn’t clear that it was due to the new medication.

Antibody: A blood protein produced by the immune system that recognizes and fights infectious organisms or toxic substances that enter the body. Each antibody is specific to a particular substance or infectious organism (such as HIV antibodies or measles antibodies). You can check out this comic book for more information. 

Example: After she was exposed to HIV, she bought an at-home rapid HIV test kit that could detect whether she had antibodies to HIV.

Antigen: Any substance or infectious organism that triggers the body’s immune system to produce antibodies (Example: HIV or a flu virus are antigens).

Example: The doctor ordered cultures of her throat to find out what antigen was causing her sore throat and fever.

Antiretroviral (ARV): A class of medications that suppress replication of retroviruses such as HIV. (See Antiretroviral therapy).  You can check out this comic book PHACS created for more information. 

Example: She provided her new doctor a list of antiretroviral medications she was prescribed by the previous clinic she went to.

Antiretroviral therapy (ART): A treatment regimen that usually includes a combination of antiretrovirals to successfully treat and suppress HIV in the body. 

Example: Soon after being diagnosed, he was prescribed antiretroviral therapy to decrease his HIV viral load.

CD4 cell: (also known as a T-cell): A type of white blood cell that fights infection with/by germs. Health care providers often measure a person’s CD4 count as an indirect way of measuring the health of their immune system with HIV. 

Example: Her bloodwork showed that her CD4 cell count was in a good range, suggesting that her immune system was strong. 

Chemokine receptor antagonists (CCR5 antagonists): A major category of anti-HIV medicines that stop HIV from using a protein called CCR5 to enter CD4 cells. CCR5 is a protein found on the surface of healthy CD4 cells, that HIV binds to along with the CD4 protein to enter the cell. 

Example: Her doctor recommended she start on a medicine with a CCR5 antagonist to treat her HIV.

Drug Class (of medicine): A group of medicines that work in the same way to treat a disease or health problem. The 6 most common classes of anti-HIV medicines: 

            *NRTIs (Nucleoside/nucleotide reverse transcriptase inhibitors)

            *NNRTIs (Non-nucleoside reverse transcriptase inhibitors)

            *PIs (Protease inhibitors)

            *INSTIs (Integrase inhibitors)

            *FIs (Fusion inhibitors)

            *Chemokine receptor (CCR5) antagonists (Chemokine receptor antagonists)

Example: Her viral load dropped to a very low level after her doctor added a new class of ARV to her medication regimen.  

Fusion inhibitors: A major category of anti-HIV medicines that prevent HIV from fusing with the membrane of CD4 cells in the body. This prevents HIV from entering the CD4 cell. 

Example: Her doctor recommended she start on a medicine with a fusion inhibitor to treat her HIV.

Highly Active Antiretroviral Therapy (HAART): Treatment for HIV infection using a combination of ARVs from at least two different classes. This is usually just referred to as “ART.”

Example: After she started the HAART regimen her viral load dropped to very low levels.

HIV-exposed: When a person has had contact with HIV in a way that makes it possible for the virus to be transmitted to that person (i.e., through contact with someone’s blood or other bodily fluid). 

Example: After being HIV-exposed, she started medication to prevent transmission of HIV.

Example: He was perinatally HIV-exposed, meaning he was exposed to HIV in his mother's womb or during birth. 

Integrase Inhibitors (INSTIs): A major category of anti-HIV medicines that prevent HIV from integrating/joining with the DNA of the cell. HIV needs to join with the DNA of the cell in order to make copies of itself. Without integration with host DNA, HIV can no longer take over healthy CD4 cells in the body. Also known as Integrase strand transfer inhibitors.

Example: She made an appointment with her doctor to talk about the new INSTI medication she heard about to treat HIV.

Morbidity: Illness

Example: Eating a diet with fruits and vegetables has been linked to fewer morbidities.

Mortality: Death

Example: Mortality rates from car crashes were lower once there were laws requiring that people wore seat belts.

Non-nucleoside reverse transcriptase inhibitors (NNRTIs): A major category of anti-HIV medicines that block an enzyme that HIV needs to make copies of itself in the body. NNRTIs work best when combined with an NRTI (see below) because they each block a different part of the same enzyme. 

Example: She made an appointment with her doctor to talk about the new medication that included both an NNRTI and an NRTI. 

Nucleoside reverse transcriptase inhibitors (NRTIs): A major category of anti-HIV medicines that block the same enzyme as NNRTIs. HIV needs access to that enzyme in order to make copies of itself in the body. NRTIs work best when combined with an NNRTI (see above) because they each block a different part of the same enzyme.

 

Example: She made an appointment with her doctor to talk about the new medication that included both an NNRTIs and an NRTI.

Perinatal: Around the time of pregnancy and birth. This could be before, during, or shortly after birth. 

Example: The doctor told her they would follow her and her baby closely during the perinatal period.

Post-exposure prophylaxis (PEP):  Antiretroviral therapy to help prevent HIV infection after someone has a high-risk exposure to HIV (such as injury from a contaminated needle, or sexual assault).

Example: She began a course of PEP the day she was stuck by a needle in the blood lab.

Postnatal: After birth (similar as “postpartum”); usually refers to after infant’s birth 

Example: She started her newborn on a vitamin during the postnatal period to help her baby’s development.

Postpartum: After birth (similar as “postnatal”); usually refers to after delivery for mother.

Example: They moved the new mother and her baby to a postpartum room shortly after birth.

Pre-exposure prophylaxis (PrEP): Antiretroviral therapy taken before an exposure to help prevent HIV infection in someone who may be regularly exposed to HIV (for instance, someone without HIV who has a sexual partner with HIV). 

Example: Her partner has HIV but she does not, so she takes PReP to prevent her getting HIV. 

Prenatal: Before birth, also known as "antenatal." This usually refers to the period during pregnancy before birth. 

Example: She took prenatal vitamins to help her and the baby’s health during pregnancy. 

Prophylaxis: This is treatment for prevention. It could be to prevent a specific disease or to prevent an ongoing infection (that’s under control) from coming back. 

Example: After being exposed to tuberculosis, she began prophylaxis medications to prevent infection.

Protease inhibitors (PIs): A major category of anti-HIV medicines that block the action of the enzyme in HIV called “protease.” HIV needs this enzyme in order to grow into a mature virus that can make copies of itself. 

Example: She made an appointment with her doctor to talk about the new PI medication she heard about to treat HIV.

Social determinants of health (SDOH): The factors in the environment where people live, work, learn, play, and worship that may affect their health. These are things out of their individual control, like air or water quality, access to transportation, or having green spaces nearby. 

Example: She began thinking about the social determinants of health in her environment that might be affecting her asthma condition.

T-cell: (also known as CD4/CD8 cell or CD4/CD8 lymphocyte): A type of white blood cell in the immune system that helps fight infections with/by germs. When someone has lower numbers of CD4 cells to fight germs, they have a higher risk of getting sick.  

Example:  Her doctor helped her understand the role that her T-cells play in fighting off the severe cold she had. 

Toxicity: How toxic something is, or its ability to poison or otherwise harm the body.

Example: The doctor assured her that the toxicity from her x-ray was very small and not a concern.

Undetectable viral load: When a person’s viral load (amount of virus in their blood) is too low to be detected by a laboratory test. An undetectable viral load usually shows that treatment is effective and/or that the person is at low risk of their HIV getting worse, or of passing the virus to others. 

Example: She went home and celebrated her undetectable viral load after struggling with remembering every dose of her medications.

U=U (Undetectable equals untransmittable): This means that someone with an HIV viral load that is undetectable (blood tests cannot detect any virus) cannot transmit HIV to someone else. 

Example: The recommendations for breastfeeding have changed in some places for mothers living with HIV who do not have detectable viral load due to the recognition that U=U. 

Abstract: A brief summary of a completed research study. It usually includes a few sentences for each of the following sections: Introduction (or Background), Methods, Results, and Conclusions. An abstract is included at the beginning of a paper (manuscript) before an author sends it a journal or to a conference committee. Then the journal or conference will tell the author if they are interested in including the author’s work. 

Example: All of the analyses for my study are completed so I will write an abstract and send it to a conference so that I can share my findings.

Analyze: To study data (pieces of information) to look for answers to a research question.

Example: The researchers finished collecting information through interviews. The next step was to analyze all the data in order to answer their research questions.

Baseline data: Information gathered about the participant at the beginning of a study, usually right after enrolling in the study. This gives information about how people are doing before the study starts, so researchers can look for any changes over time. 

Example:  The doctor reviewed baseline data from the participant’s first study visit to see if there were any changes after 6 months on the new medication.

Bias: When a study seems to unfairly favor a certain result. This could be because the data in a study does not accurately represent the participants or the study topic. The data may not have measured the right thing, or the participants may be different in some way from the majority of people that the study is trying to understand. 

Example: The study on crime was biased because they only interviewed people who lived in a nearby rural area with low crime. 

Example: The study about how COVID-19 has impacted people’s finances was biased because they only interviewed people who make over $200,000 a year and who work from home. Therefore, the study made an incorrect generalization that “most people did not suffer much financially from COVID-19.” 

Case Report Form (CRF): A form in PHACS used to collect data (information) that the study (protocol) requires. 

Example: Once the study nurse asked the participant all of the health questions, she filled out the CRF with the information so it could be entered into the computer system.

Clinical Trial: A study designed to find out about the benefits or harms of a new (experimental) medicine or medical device in humans. In a clinical trial, some participants receive the new medicine or medical device, others receive a placebo (a fake), or others may receive the typical (standard) treatment. In some trials, called “double blinded clinical trials,” neither the researchers or participants know who has gotten which. The researchers can then compare the groups to see the impact of the medicine or device.

Example: She enrolled in the clinical trial to see if a new medication would help her condition that had been hard to treat.

Confounding Factor, or confounder: Any factor that could influence the results of a study and make it a false negative or false positive. It is a type of “covariate.” .

Example: The study found a link between drinking coffee and heart health, but that study may have problems because it didn’t consider smoking as a confounder. So, it could be that since many smokers also drink coffee, it may have been the smoking that was the problem and not the coffee. In this example, smoking is connected to both drinking coffee AND heart problems. 

Control group: The group of participants who do NOT receive the experimental medicine or the group who does not have the characteristic of interest. 

Example: The study enrolled participants who had asthma as well as a control group who did not have asthma.

Example: Everyone in the clinical trial was taking the same kind of medicine for their asthma. The study gave some participants a new experimental drug to treat asthma, but the control group stayed on their normal treatment for asthma. Then researchers looked to see if the new treatment was better, the same, or worse.

Covariate: Any factor that influences the outcome (or thing being studied). It is different than a “confounding factor” because it only influences either the cause OR the effect, but not both.

Epidemiologist: A type of researcher who studies how often diseases occur in large populations, and why they occur. 

Epidemiology: This is the study of how often diseases occur in large populations, and why they occur.

Exposure: A characteristic that might explain or predict a health outcome. It means that a participant was “exposed” to something, such as a medicine, a certain type of diet, or a certain amount of exercise. Or they had a certain kind of experience, like being pregnant/giving birth or experiencing trauma. 

Example:  We couldn’t decide whether to use sleep or diet as our exposure when trying to understand more about memory skills (the outcome) in young children.

Hypothesis: An educated guess about the relationship between two things, or about an explanation for something. The hypothesis usually comes with writing a research question. Even though they don’t know the answer yet, the researchers make an educated guess about how they think it will turn out.  

Example: Based on what we knew about vitamins from reading other studies, our hypothesis was:  Giving vitamins to premature infants will lead to better growth at 1 year of age.

Incidence: The rate at which, or how quickly, NEW cases of a disease are happening. This is similar but different than prevalence.

Example: In one single day, the daily incidence of COVID-19 infections was 30,900 in Italy. This means that on that day, there were 30,900 NEW cases of COVID-19. This number does not count the total number of people who already had COVID-19 before that date. 

Informed consent:   The process of learning all of the key facts about a study before deciding whether to participate. The informed consent process continues throughout the study to provide information for participants, some of whom may decide to stop participating.

Example: We could not complete the informed consent process because the person did not have enough time to consider the information we provided about the study.

Observational cohort study: A study where scientists observe what happens to a group of people over time, but without interfering in their lives or health care. 

Example: PHACS is an observational cohort study because it simply collects information from a group of participants over time. For example, PHACS does not give participants certain medications to test how effective they are; it collects information on what medicines participants are already taking.

Outcome: A characteristic that researcher studies. An outcome is usually something you want to understand better, or identify predictors for that outcome.

Example: We wanted to understand more about mental health so we will make that our outcome factor, then we will think about what factor might predict having better mental health.

Participant: A volunteer who agreed to participate in a study.

Example: Once she signed the consent forms, she was considered a participant in the study.

Prevalence: Refers to the proportion of the population affected by a disease at a particular point in time (like a camera snapshot). 

Example: The prevalence of COVID-19 infections was 500,000 in Italy on xx/xx/xxxx. This means that on that day, there were 500,000 cases of COVID-19, including any new cases that happened that day. This number includes everyone who had COVID-19 at that moment in time. 

Protocol: A detailed plan that spells out the objectives, study design, and methodology for a study. A study protocol must be approved by an IRB before implementation.

Example: The clinical team studied the protocol before enrolling participants to be sure they understood what information they needed to collect, and what procedures would happen at the study visits.

Qualitative research: A method of doing research that focuses on getting a deep understanding of a topic, like an experience or opinion. Information is typically collected via interviews, group discussions, videos or pictures. 

Example: The researcher preferred using qualitative methods to learn more about living with HIV because it allowed the participant to provide more in-depth answers about their experiences.

Quantitative research: A method of doing research that gets information that can be turned into numbers in order to answer a question. Information is typically collected via analyzing samples of blood or tissue, surveys, tests, or other paper forms.

Example: The researchers used quantitative methods that included several paper and pencil questionnaires, then added up their answers to analyze the data. 

Sample: A subset of people who represent a larger population.

Example: We couldn’t study the whole population of young adults with HIV but we enrolled a sample of people in our study who we hope are similar to the whole population. 

Statistician: A scientific specialist who analyzes all of the data collected in a study to answer the questions important to the study. Statisticians are part of the protocol team and are important in designing the study.

Example: The statistician gave us a report that summarized all the data so we could answer our research question.

Working Group (WG): Within PHACS, a group of scientists, clinicians, and community members that reviews the data, monitor triggers, and develops conference and publication materials in a particular area of interest.   

Example: The new staff member was interested in understanding how diabetes affected the health of women with HIV so she joined the Metabolic Working Group to explore that topic.