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Term Definition
Ankylosing spondylitis

A form of progressive arthritis due to chronic inflammation of the joints in the spine

Ascites

Abnormal accumulation of fluid in the abdominal cavity

Assent

Agreement by a minor or other person not competent to give legally valid informed consent, that is, a child or cognitively impaired person to participate in the registry

Assistive Devices

If you have a disability or injury, you may use a number of assistive devices. These are tools, products or types of equipment that help you perform tasks and activities. They may help you move around, see, communicate, eat, or get dressed.

Assistive Technology

Any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities

Augmentative/Alternative Communication (AAC)

Any device that facilitates communication for those with limited or absent speech; examples: communication boards; pictographs–symbols that look like the things they represent; ideographs–symbols representing ideas

Biospecimen

Samples of urine, blood, tissue, cells, DNA, RNA, or protein, to be stored in a biorepository for future research

Encephalopathy

A worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood

Endocrinology

Part of internal medicine that focuses on disorders of the internal (endocrine) glands such as the thyroid and adrenal glands. An endocrinologist also deals with disorders such as diabetes, metabolic and nutritional disorders, obesity, pituitary diseases, and menstrual and sexual problems

Endoscopic Retrograde Cholangiopancreatography (ERCP)

Test that combines the use of a flexible, lighted scope (endoscope) with X-ray pictures to examine the tubes that drain the liver, gallbladder, and pancreas

Erythema nodosum

Reddish, painful, tender lumps most commonly located in the front of the legs below the knees

Esophageal Varices

Abnormal, enlarged veins in the lower part of the esophagus

FISMA

Federal Information Security Management Act is legislation meant to ensure the security of data in the federal government. Annual reviews are conducted to assess the security controls in information systems. NIH requires that every registry under its umbrella be FISMA compliant. PSC Partners Registry is FISMA compliant.

GED

General Educational Development tests - a group of five subject tests, which, when passed, certify that the taker has American or Canadian high school level academic skills

GRDR

Global Rare Diseases Patient Registry and Data Repository; http://grdr.info; the PSC Partners patient registry is one of the rare disease patient registries under the umbrella of the GRDR

Hematology

Part of internal medicine focusing on the blood, spleen and lymph. A hematologist treats conditions such as anemia, clotting disorders, sickle cell disease, hemophilia, leukemia, and lymphoma

HIPAA

Health Insurance Portability and Accountability Act (1996) for the protection of identifiable health information. HIPAA requires the protection and confidential handling of protected health information. The PSC Partners patient registry is HIPAA compliant.

Institutional Review Board (IRB)

An independent board that approves, monitors and reviews research involving humans. Its number one priority is to protect human subjects from harm. The PSC Partners patient registry is IRB approved and will be IRB monitored annually.

Magnetic resonance cholangiopancreatography (MRCP)

Special type of MRI (imaging scan) using computer software that specifically images pancreatic and bile ducts

Myasthenia gravis

Chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body

Nephritis

Inflammation of one or both kidneys

ORDR

Office of Rare Diseases Research; a branch of National Institutes of Health (NIH); ORDR coordinates and supports rare diseases research, responds to research opportunities for rare diseases, and provides information on rare diseases; uniting rare disease patient registries is one of their initiatives

Participant/Registrar

Within the context of this registry, by participant we mean the patient, and by registrar, we mean the person recording the answers.

PatientCrossroads

Registry platform selected by the National Institutes of Health's (NIH) Office of Rare Diseases Research (ORDR) for patient registries in their pilot program; PSC Partners patient registry uses PatientCrossroads as its registry platform

Percutaneous transhepatic cholangiogram (PTC)

X-ray of the bile ducts inside and outside the liver; taken after contrast (dye) is injected directly into the bile ducts

Pruritus

Itching

Sacroiliitis

Inflammation of one or both of your sacroiliac joints — the places where your lower spine and pelvis connect

Sarcoidosis

Growth of tiny collections of inflammatory cells (granulomas) in different parts of your body — most commonly the lungs, lymph nodes, eyes and skin

Scleritis

Inflammatory disease that affects the white outer coating of the eye, known as the sclera

Sensorineural hearing loss

Hearing loss that occurs from damage to the inner ear, the nerve that runs from the ear to the brain (auditory nerve), or the brain

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