Actinomycin: A chemotherapy drug, also called Dactinomycin and Cosmegen.
Adjuvant therapy: Treatment given after the primary treatment to increase the chances of a cure. Adjuvant therapy may include chemotherapy, radiation therapy, hormone therapy, or biological therapy.
Adriamycin: A chemotherapy drug, also called Doxorubicin.
Adverse event: An untoward clinical event experienced by study participant while taking part in clinical trial.
Aniridia: Complete or partial absence of the iris in the eye.
Autologous bone marrow transplantation (ABMT): A procedure in which bone marrow is removed from a person, stored, and then given back to the person after intensive treatment.
Autopsy: examination of a body after death. Autopsies are performed to determine cause of death, or to verify a diagnosis.
Benign: Not cancerous, does not invade nearby tissue or spread to other parts of the body.
Bilateral: Tumor is found in both kidneys.
Biopsy: A procedure performed to remove tissue or cells from the body for examination under a microscope.
CCG: Children's Cancer Group (now merged into COG).
CCSK: Clear cell sarcoma of the kidney.
Chemotherapy: The treatment or control of cancer using anticancer drugs that destroy cancer cells by interfering with their growth and reproduction.
Chronic renal failure: Slow and progressive loss of kidney function over several years, often resulting in end-stage renal disease.
Clinical data system: Any information system concerned with the capture, processing or communication of patient data.
Clinical study/trial: A research study that tests how well new medical treatments or other interventions work in people. Each study is designed to test new methods of screening, prevention, diagnosis, or treatment of a disease.
COG: Children's Oncology Group.
Confidentiality (protecting privacy): The policies restricting access to a person’s data to those whom the patient agrees need access to it ,except rarely in emergency and for the public good (e.g. to contain epidemics, allow important research to be undertaken or solve serious crime). In addition, other regulatory and institutional approval may be needed (e.g. the need to seek consent from medical ethics committees or relevant national authorities).
Congestive Heart Failure (CHF): A condition where the heart muscle weakens and can’t pump blood efficiently throughout the body that results in a patient retaining excessive fluid, often leading to swelling of the legs and ankles and congestion in the lungs.
Consent: A process during which clinicians inform patients/families about treatment, possible adverse events and the benefits of treatment. Before treatment or enrollment in a study can begin, the patient/families must sign forms to indicate they understand what has been explained to them and consent to the proposed treatment or the research procedure. (Usually referred to by "informed consent.")
CT scan: Computed tomography scan. A series of detailed pictures of areas inside the body, taken from different angles; the pictures are created by a computer linked to an x-ray machine. Also called computerized tomography and computerized axial tomography (CAT) scan.
Cyclophosfamide(cytoxan,endoxan,CTX,CPM): An anticancer drug that belongs to the family of drugs called alkylating agents.
Database: A collection of data in machine readable format organized so that it can be retrieved or processed automatically by computer.
Diagnosis: The process of determining the cause and nature of a patient's disease or injury.
Dialysis: The process of cleaning wastes from the blood artificially. This job is normally done by the kidneys. If the kidneys fall, the blood must be cleaned artificially with special equipment. The two major forms of dialysis are hemodialysis and peritoneal dialysis.
DNA (deoxyribonucleic acid): One of the two nucleic acids found in all cells. DNA is a part of a cell that contains and controls all the genetic information, the thousands of genes necessary to reproduce it. The genes are responsible for passing on traits from generation to generation.
Doxorubicin: A chemotherapy drug, also called Adriamycin.
DSC: NWTS Data and Statistical Center located in Seattle, Washington.
End-Stage Renal Disease (ESRD): Total chronic kidney failure. When the kidneys fail, the body retains fluid and harmful wastes build up. A person with ESRD needs dialysis or transplantation to replace the work of the failed kidneys.
Follow-up: After treatment a participant's health is followed. For the NWTS this follow-up begins at the time of diagnosis and enrollment and continues through the life of each patient for the duration of the study.
Gene: The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein.
HIPAA: Health Insurance Portability and Accountability Act is a new federal law for protected health information.
Histology: The cell type(s) making up Wilms tumor and the study of these cells.
ICD coding (The International Statistical Classification of Diseases and Related Health Problems): codes to classify diseases and wide variety of signs, symptoms, abnormal findings, complaints, social circumstances and external causes of injury or disease.
Ifosfamide(IFOS,IFEX,Holoxan): An anticancer drug that belongs to the family of drugs called alkylating agents.
Informed Consent: Process in which a person learns key facts about a clinical trial, including potential risks and benefits, before deciding whether or not to participate in a study, and then informed consent continues throughout the trial.
Informed Consent Form: The document where the subject learns about the study and agrees to voluntary participate.
Imaging: Various methods such as x-ray films, ultrasonography, and CT scans used to take pictures of the inner structures of the body.
Institutional Review Board (IRB): Committee constituted according to NIH Office for Human Research Protection requirements, and having responsibility for reviewing, approving, and monitoring the conduct of clinical research protocols for their institutions.
Kidney: One of a pair of organs that removes waste from the blood as urine. The kidneys also produce a substance that stimulates red blood cell production, and have a role in blood pressure regulation.
Kidney infection: See Urinary Tract Infections (UTI).
Kidney transplantation: Kidney transplantation is a transfer of a healthy kidney from one individual (donor) to another (recipient) through a specialized surgery. A kidney transplant may come from a living donor, usually a relative, or from someone who has just died (cadaver transplant).
Late Effects: Side effects of cancer treatment that appear months or years after treatment has ended. Late effects include physical and mental problems (congestive heart failure, chronic renal failure, pulmonary fibrosis, pregnancy complications, etc.) and second cancers (see: SMN).
Magnetic resonance imaging (MRI): A procedure in which a magnet linked to a computer is used to create detailed pictures of areas inside the body. Also called nuclear magnetic resonance imaging.
Malignant: Cancerous; a growth with tendency to invade and destroy nearby tissue and spread to other parts of the body.
Metastasis: The spread of cancer from one part of the body to another. Tumors formed from cells that have spread are called “secondary tumors” and contain cells that are like those in the original (primary) tumor.
Observational study: A study in which defined outcomes are measured in a carefully defined population. These studies do not include treatment or any other kind of intervention.
Nephrectomy: Surgical removal of a kidney. Radical nephrectomy removes the kidney and adjoining structures such as the adrenal gland and lymph nodes. Simple nephrectomy removes only the kidney. Partial nephrectomy removes only that part of the kidney that contains the tumor.
Palliative treatment: The use of medical remedies to relieve pain, symptoms, and/or prevent further complications rather than to cure.
Participant: A person who participates in the clinical trial or research study.
Pathology: Study of diseases and their characteristics.
Pathological staging: A method used to determine the stage of cancer. Tissue samples are removed during surgery or a biopsy. The stage is determined based on how the cells in the samples look under a microscope.
Pathologist: A doctor who identifies diseases by studying cells and tissues under a microscope.
Pathology report: The description of cells and tissues made by a pathologist based on microscopic evidence, and sometimes used to make a diagnosis of a disease.
Positron emission tomography scan: PET scan. A computerized image of the metabolic activity of body tissues used to determine the presence of disease, using a short-lined radioactive isotope.
POG: Pediatric Oncology Group (now merged into COG).
Primary cancer: The original site where cancer occurs.
Pre- and post-operative therapy: Treatment before or after the surgical procedure adopted for that patient.
Protocol: Written, detailed action plan providing the background, specifying the objectives, and describing the design and organization of a clinical trial, or research study. Every site (institution) in the trial uses the same protocol to ensure consistency of treatment and procedures, enhance communication, and ensure that results from all sites (institutions) can be combined and compared.
Radiation-induces lung fibrosis: Scar tissue buildup in the section of lung tissue that has been exposed to radiation therapy. This represents a chronic side effect.
Radiation pneumonitis: Inflammation of lung tissue caused by exposure to radiation therapy; it represents a short-term complication from radiation therapy.
Radiation Therapy: The use of high-energy radiation from X-rays, gamma rays, neutrons, and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body (external beam radiation therapy), or it may come from radioactive material placed in the body in the area near cancer cells (internal radiation therapy, implant radiation, or brachytherapy).
Randomization: When referring to a clinical trial, the process by which human subjects are assigned by chance to separate groups that compare different treatments or other interventions. Randomization gives each participant an equal chance of being assigned to any of the groups.
Recurrence or Relapse: The findings of tumor re-growth, after remission, in the original tumor bed or elsewhere in the body.
Remission: A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.
Resection: Removal of tissue or all or part of an organ by surgery.
Second Malignant Neoplasm (SMN): Another cancer diagnosed after the development of a first cancer which is a completely different type of cancer than was present initially.
Stage: The extent of a cancer within the body, especially whether the disease has spread from the original site to other parts of the body.
Surgery: A procedure to remove or repairs a part of the body or to find out whether disease is present. An operation.
Survivor: One who remains alive and continues to function after overcoming difficulties or life-threatening diseases like cancer.
Survivorship: In cancer, survivorship covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. It includes issues related to the ability to get health care and follow up treatment, late effects of treatment, second cancers, and quality of life.
Thoracotomy: An operation to view the lung (that may be used to confirm cancer).
Tumor: An abnormal mass of tissue that results from excessive cell division. Tumors perform no useful body function. They may be benign (not cancerous) or malignant (cancerous).
Tumor bed: The site of the original tumor after it is surgically removed.
Ultrasound test (US): A test that bounces sound waves off tissues and internal organs and changes the echoes into sonograms (pictures).
Urinalysis: A test that determines the content (proteinuria, hematuria, bacteriuria, etc.) of the urine.
Urinary tract infections (UTI): Infections of urinary system. There are three types of urinary tract infections: urethritis is infection of the urethra; cystitis is infection of the bladder; pyelonephritis occurs when bacteria ascend up the ureters and infect the kidneys.
Vincristine: A chemotherapy drug, also called Oncovin.