Glossary

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A

APOL1-mediated kidney disease

A spectrum of kidney diseases that is associated with mutations or variants in the apolipoprotein L1 (APOL1) gene and are linked to an increased risk for kidney disease in people of African and Caribbean descent. The APOL1 gene makes a protein in your immune system which is your body's cells and tissues that fight infection. If there is a mutation in one or both APOL1 genes, kidneys can be damaged and can cause kidney failure.

Altruistic donor

A living kidney donor who donates a non-directed kidney to someone they do not know. The transplant hospital makes sure the kidney goes to the person at the top of the list with the best match.This is also known as a non-directed donor.

Anemia

A medical condition in which there are not enough red blood cells to carry oxygen through your body. Anemia is common for people with late-stage chronic kidney disease (CKD) and affects most dialysis patients.

Angiotensin converting enzyme (ACE) inhibitors

A group of medicines used to treat high blood pressure and heart failure

Angiotensin receptor blockers (ARBs)

A group of medicines that lower blood pressure

Anxiety disorders

A reaction that the body may have to stress; intense fear and anxiousness that can get in the way of normal activities

Artery vein fistula (AVF)

A type of vascular access where a surgeon creates a connection between your artery and your vein to create a large blood vessel for blood to flow through it. During dialysis, needles are inserted in the AV fistula to get access to the bloodstream.

Artery vein graft (AVG)

A soft rubbery tube that a surgeon implants into your arm.

Artificial kidney

An innovation in kidney treatments which may be a wearable or implantable option for kidney replacement therapy.

Asymptomatic

Showing no symptoms of infection, illness, or disease

Atherosclerotic cardiovascular disease (ASCVD)

A condition where arteries narrow, which restricts blood flow to organs. This can lead to heart attacks and strokes.

Atypical hemolytic uremic syndrome (aHUS)

A rare genetic disease that causes tiny blood clots to form, which blocks blood flow to organs and can lead to kidney failure.

Autosomal dominant polycystic kidney disease (ADPKD)

A genetic disorder that causes fluid-filled cysts to grow in your kidneys and can also affect other organs, especially the liver. ADPKD runs in families and does not skip a generation.

B

Biomarker

Characteristics of the body that can be measured, such as blood pressure.

Blood glucose

Also known as blood sugar, glucose is the body’s major source of energy.  Too much glucose in the blood makes your kidneys work harder.

C

Calcium phosphate

A mineral that is used to treat a lack of calcium, which is important for bone formation and maintaining the body  

Cardiologist

A doctor who specializes in the study or treatment of heart diseases and heart problems

Cardiovascular

Relating to the heart and blood vessels

Catheter

A tube for putting fluids into or out of your body

Chronic kidney disease (CKD)

Lasting damage to your kidneys that can get worse over time. If the damage is severe, your kidneys may stop working. CKD may cause your kidneys to lose their ability to filter waste and fluid out of your blood. Waste can build up in your body and harm your health.

Co-insurance

A percent of the cost of health services you pay after you meet your deductible. See definitions for “copayment,” “deductible” and “co-insurance.

Coordination of benefits (COB)

The process that allows plans that provide health and/or prescription coverage for a person with Medicare to determine their respective payment responsibilities

Copayment (copays)

A fixed amount paid by an individual who has health insurance. See definitions for "copayment," "deductible" and "co-insurance.

Creatinine

A waste product in your blood that comes from your muscles. Healthy kidneys take creatinine out of your blood and send it out of your body through your urine. If your kidneys are not working the way they should, creatinine will build up in your blood.

Cystatin-C

A protein used as a biomarker for kidney function

Cystinosis

A rare genetic disease where cystine (protein) builds up and leads to permanent kidney damage.

D

DASH Diet

An eating plan to lower or control high blood pressure. It consists of being low in salt and rich in fruits, vegetables, whole grains, low fat dairy and lean protein.

Deceased organ donor

A person who has just died and had given permission (or whose legally authorized representative gave permission) to donate their healthy organs, eyes or tissue.

Deductible

A certain amount you pay before insurance will pay for the cost of health service. See definitions for "copayment," "deductible" and "co-insurance."

Diabetes

A disease that causes your blood sugar (glucose) to be too high because your body cannot make or use insulin the way it should.  Diabetes is the most common cause of kidney failure.

Diabetic kidney disease

Kidney disease that is caused by diabetes.

Dialysis technicians

Staff who work closely with health care professionals and patients to prepare care during dialysis by assembling and maintaining dialysis machines, ensuring safety and making sure the patient is comfortable.

Diverticulosis

A condition that occurs when small sacs form and push outward through weak spots in the wall of the colon.  Mild cases may not show any symptoms, but pain in the lower abdomen may develop as the condition worsens.

Double-blind (masked) study

A study in which neither the participants nor the researcher knows what treatment is received until the clinical trial is over.

Dry weight

The weight of a person without any extra fluid in the body.

E

Electrolytes

Essential minerals that control the fluid balance of the body and are important in how the muscles work, making energy in the body.

Epidemiologist

Someone who studies diseases and how they are found and spread between groups of people.

Estimated glomerular filtration rate (eGFR)

A measure of how well your kidneys are working. It is based on your blood creatinine levels and your age, sex, and body weight. The eGFR is an estimated number to tell doctors what stage of kidney disease you have.

F

Fabry disease

A rare genetic disorder that does not make enough alpha-Gal (enzyme) to break down GL-3 (fatty substance). When GL-2 builds up, organs become damaged.

Focal segmental glomerulosclerosis (FSGS)

A rare, long term glomerular that causes scarring in your kidneys.

G

Genetic counselor

A professional who can review genetic test results with individuals to understand the implications of findings.

Genetic testing

The process of testing to examine your DNA to look for changes, also known as mutations, that can increase the risk of a genetic disease.

Gestational diabetes

High blood sugar during pregnancy, as a result of pregnancy hormones blocking the body from using insulin (hormone that turns sugar into energy) the way it should. Blood sugar levels usually go back to normal after giving birth.

Glomerulonenephritis

A group of diseases causing inflamed tissues of the kidneys, resulting in issues filtering waste from the blood.

Glucagon-like peptide-1 receptor agonists (GLP-1 RA)

A group of drugs used to lower blood sugar levels and treat type 2 diabetes.

Gout

A form of arthritis caused by a buildup of uric acid. Kidney disease is a leading cause of gout.

H

Health disparities

Differences in health outcomes that may occur by gender, race or ethnicity, education, income, disability, geographic location, and sexual orientation among others.

Health equity

The state in which every person has a fair and just opportunity to achieve their highest level of health.

Hematuria

A medical term indicating blood in the urine

Hemodialysis

One type of dialysis treatment for kidney failure, which uses a machine to clean your blood.

Hepatology

An area of medicine that focuses on disease of the liver as well as related conditions.

Home Dialysis
Hyperkalemia

A medical term used to indicate too much potassium in your blood.

Hyperoxaluria

A medical term that refers to having too much oxalate (a natural chemical in your body) in your urine.

Hypersomnia

When a person sleeps for a long period of time and is unable to stay awake even after a full night of good sleep.

Hypertension

High blood pressure; ((it is when low pressure is 90 or higher or high pressure is 140 or higher (ex. 140 over 95); healthy blood pressure (ex. 120 over 80)) Hypertension is the second most common cause of kidney failure.

I

IRB

A committee that applies research ethics by reviewing the methods proposed for research to ensure that they are ethical.

IgA nephropathy

A rare disease that causes swelling and kidney damage due to a buildup of proteins in your kidneys.

Immunosuppressants

Medications used to reduce the strength of your immune system to prevent your body from rejecting a transplanted organ.

Inclusion criteria/Exclusion criteria

Factors that allow someone to participate or not participate in a clinical trial. An example of exclusion criteria is high blood pressure. An example of inclusion criteria is being over the age of 18.

Incompatible kidney transplant

A kidney transplant performed when the recipient’s and donor’s blood types do not match.

Informed consent

The process of informing participants about the risks and potential benefits about a clinical trial before someone decides whether to enroll.

Insomnia

A chronic inability to get enough sleep especially due to trouble falling asleep or staying asleep.

Insulin

A hormone made by your pancreas that converts sugars in food into energy.

Interventional radiology

Medical imaging (MRI, CT, ultrasound) used to guide minimally invasive surgical procedures that diagnose, treat and cure many kinds of conditions.

Intradialytic exercise

Exercising while undergoing hemodialysis treatments.

K

Kidney atrophy

Kidney has shrunk or decreased in size.

Kidney biopsy

Procedure in which doctors take a small piece of tissue from the kidneys to look at it under a microscope.

Kidney stones

Hard, pebble-like pieces that develop in the kidneys when there are high levels of certain minerals in the urine.

KidneyX

A public-private partnership between the US Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) to accelerate innovation in prevention, diagnosis, and treatment of kidney diseases.

L

Liver cysts

Abnormal sacs filled with fluid in the liver.

Living organ donor

A family member, friend, someone in your community or even a stranger that gives away a healthy organ. Usually, they must be at least 18 years old and in good overall physical and mental health.

Long COVID

Long-term health effects from a COVID-19 infection.

Lupus nephritis

When your immune system attacks your kidneys due to the autoimmune disease lupus.

M

Medicaid

A federal and state health insurance program for people with low income or other qualifying factors.

Medicare

The federal health insurance program for people over 65 years of age, certain younger people with disabilities and people with end-stage renal disease, also known as kidney failure.

Metformin

A medicine used together with diet to lower high blood sugar levels in patients with type 2 diabetes.

N

Nephrectomy

A surgery to remove all or part of a kidney.

Nephrologist

A doctor who specializes in the kidneys and kidney diseases.

Nephrology nurse

A registered nurse who is trained to take care of kidney patients. You will see nephrology nurses in your doctor's office and in your dialysis center.

Nephrology social worker

A professional who serves as a support system to adjusting and understanding kidney disease.

Nephrotoxins

A toxic substance that damages, destroys the cells and tissues of the kidneys.

Neuropathy

Disease of the nervous system, especially affecting the hands and feet.

Neurosurgeon

A surgeon specializing in surgery on the nervous system, especially the brain and spinal cord.

Non-steriodal mineralcorticoid antagonists (MRAs)

Prescription medication which is commonly associated with improved outcomes of health disease, but most recently a new class (finerenone) has been demonstrated to slow the progression of diabetic kidney disease.

P

Paired exchange program

An alternative for transplant candidates whose willing donors are incompatible matches when the recipient in one pair is compatible with the donor from the other pair and vice versa.

Percutaneous biopsy

A procedure during which a needle is inserted into a targeted area in the body to collect cells or tissue.

Peritoneal dialysis

A type of dialysis treatment for kidney failure that can be done at home. It uses a fluid that you put in your belly and then removed to clean your blood.

Polycystic kidney disease (PKD)

A genetic type of kidney disease that causes about 2 percent of all cases of kidney failure in the United States. See definition for “autosomal dominant PKD”

Potassium

A mineral and electrolyte found in most foods that play an important role in your body such as boosting your nervous system, preventing muscle cramps and improving bone health and muscle tissue growth.

Potassium binder

Medications that treat high potassium levels in the blood.

Preemptive kidney transplant

A surgery in which you receive a kidney transplant before kidney function deteriorates to the point of needing dialysis.

Premiums

An amount to be paid for an insurance policy, monthly.

Prevention trial

A clinical trial that attempts to find ways to prevent a condition or prevents a returning condition.

Primary care provider

A doctor who serves as the main point of contact for all basic medical needs and provides services to all patients. This person can be a doctor, physician assistant, or nurse practitioner.

Primary hyperoxaluria

A rare genetic disorder that mainly damages the kidneys and results from a buildup of a substance called oxalate, which normally is filtered through the kidneys and passed in the urine.

Principal investigator

The person in charge of the experiment or trial who leads the clinical research team and regularly monitors study participants’ health to determine the study’s safety and effectiveness.

Proprotein convertase subtilisin/kexin type 9 (PCSK9) serine protease inhibitor

A new class of medicine that lower cholesterol in the blood.

Proteinuria

Protein in the urine.

Pruritus

Itchy skin; it is a common symptom for people living with chronic kidney disease, especially those on dialysis.

Q

Quality of life trial

A clinical trial that studies how the side effects of a treatment affect the patient's well-being and daily functions.  

R

Registered dietician

A health professional that is certified in diet and nutrition.

Renal dietician

A dietitian who works closely with patients that have kidney disease to help monitor and educate patients on diet and nutrition.

Renin-angiotensin-system (RAS) inhibitor

Medicines specifically for the treatment of high blood pressure.

S

Safeguard

A measure taken to protect someone who participates in clinical trials. These safeguards protect from possible side effects and being treated unfairly during the trial.

Screening trial

Also known as a diagnostic trial, evaluates new tests for detecting health conditions before symptoms are present.

Secondary hyperparathyroidism (SHPT)

A medical term for what occurs when a disease you have causes low blood calcium, which makes your parathyroid glands grow larger and make too much parathyroid hormone. The most common cause of SHPT is kidney failure.

Short daily home hemodialysis

A type of hemodialysis done for about two hours, every day of the week or everyday that can be done at any time of the day that is convenient for you. Fluid is taken out of your blood and can make you feel better between treatments.

Side effect

A secondary and usually adverse effect (as of a medicine).

Single-blind (masked) study

Participants of this study do not know which treatment they are receiving.

Social determinants of health

The conditions in places where people live, learn, work, and play that affect a wide range of health and quality-of life-risks and outcomes.

Socioeconomic

The position of a person or group based on financial differences and social class.

Sodium/glucose cotransporter-2 (SGLT2 inhibitors)

Prescription medication used with diet and exercise that can lower blood sugar in adults with type 2 diabetes.

Stage 1 kidney disease

Mild kidney damage. Kidneys work as well as normal. eGFR is 90 or higher

Stage 2 kidney disease

Mild kidney damage. Kidneys still work well. eGFR is 60 to 89

Stage 3 kidney disease

Mild to moderate kidney damage. Kidneys don’t work as well as they should.

Stage 3a: eGFR is 45 to 59; Stage 3b: eGFR is 30 to 44

Stage 4 kidney disease

Severe kidney damage. Kidneys are close to not working at all. eGFR is 15 to 29

Stage 5 kidney disease

Most severe kidney damage. Kidneys are close to not working or have stopped working (failed). eGFR is less than 15

Support system

A network of people who provide an individual with practical or emotional support. Some examples can include cooking meals for someone and driving them to an appointment.

T

Transplant surgeon

Doctors who perform the actual transplant surgery and work closely with the rest of the transplant team right before and right after the surgery.

Treatment trial

A type of clinical trial that tests new medicines, treatments or therapies for a disease of health condition.

Tunneled venus catheter

A thin tube that is placed into a vein beneath the skin, allowing long-term access to the vein. This catheter is used for hemodialysis.

Type 1 diabetes

When the pancreas does not make insulin or makes very little insulin. Type 1 diabetes is a chronic condition that usually happens in kids or young adults.

Type 2 diabetes

When blood sugar levels are too high and your body does not use insulin properly. Type 2 diabetes is a chronic condition that usually happens in older adults.

U

United Network for Organ Sharing (UNOS)

A nonprofit organization that maintains a computer database of all organizations and transplant centers to provide organs to patients best suited in receiving them.

Urine albumin-to-creatinine (UACR) test

A test which measures how much albumin (the main protein in your blood) and creatine (a waste product in your blood that comes from your muscles) are in your urine. Anything above 30mg/g indicates kidney disease.

Urologist

A doctor who specializes in the study or treatment of the function and disorders of the urinary tract and reproductive organs.

V

Vascular access

Placement of a catheter into a patient’s vein to provide treatment.

Vascular access team

A team of trained health care professionals (including doctors and nurses) that consult about devices, insert catheters and follow up on the care of it to reduce complications.

X

Xenotransplantation

The transplantation of organs or tissues from an animal source into a human recipient.