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Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium (U19)

https://www.niams.nih.gov/grants-funding/funded-research/pediatric-reported-outcomes-pepr-consortium

PEPR Overview The Validation of Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR) Consortium (U19) will capitalize on recent advances in the science of Patient Reported Outcomes (PROs) to assess the health of children with a variety of chronic diseases and conditions in clinical research and care settings. Examples of

Ankylosing Spondylitis

https://www.niams.nih.gov/health-topics/ankylosing-spondylitis

What is ankylosing spondylitis? Ankylosing spondylitis is a type of arthritis that causes inflammation in certain parts of the spine. Over time, this inflammation in the joints and tissues of the spine can cause stiffness. In severe cases, this may cause the bones in the spine to grow together, which can lead to a rigid spine that is difficult to bend. Many people with ankylosing spondylitis have mild episodes of back pain and stiffness that come and go. But others have severe, ongoing back pain and stiffness. Other symptoms also may develop if other areas of the body are affected

Fibromyalgia

https://www.niams.nih.gov/health-topics/fibromyalgia

What is fibromyalgia? Fibromyalgia is a long-lasting disorder that causes pain and tenderness throughout the body. It also can cause you to feel overly tired (fatigue) and have trouble sleeping. Doctors do not fully understand what causes fibromyalgia, but people with the disorder are more sensitive to pain.

Epidermolysis Bullosa

https://www.niams.nih.gov/health-topics/epidermolysis-bullosa

What is epidermolysis bullosa? Epidermolysis bullosa is a group of rare diseases that cause fragile skin that leads to blisters and tearing. Tears, sores, and blisters in the skin happen when something rubs or bumps the skin. They can appear anywhere on the body. In severe cases, blisters may also develop inside the body. The symptoms of the disease usually begin at birth or during infancy and range from mild to severe.

Marfan Syndrome

https://www.niams.nih.gov/health-topics/marfan-syndrome

What is Marfan syndrome? Marfan syndrome is a genetic disorder that affects the body’s ability to make healthy connective tissue, which supports the bones, muscles, organs, and tissues in your body. The condition can affect different areas of the body, including: Bones, ligaments, tendons, and cartilage. Organs, such as the heart and lungs. Skin.

Juvenile Idiopathic Arthritis (JIA)

https://www.niams.nih.gov/health-topics/juvenile-arthritis

What is juvenile idiopathic arthritis (JIA)? Juvenile idiopathic arthritis (JIA) is the most common type of chronic, or long-lasting, arthritis that affects children. It happens when the immune system attacks healthy joint tissues. JIA broadly refers to several different chronic (long-lasting) disorders involving inflammation of joints (arthritis), which can cause: Joint pain. Swelling. Warmth. Stiffness. Loss of motion. JIA may last a few months or years, or it may be a lifelong disease.

Polymyalgia Rheumatica and Giant Cell Arteritis

https://www.niams.nih.gov/health-topics/polymyalgia-rheumatica-giant-cell-arteritis

What are polymyalgia rheumatica and giant cell arteritis? Polymyalgia rheumatica and giant cell arteritis are closely linked inflammatory disorders. Some people have one of the disorders while others develop both of them. Polymyalgia rheumatica causes muscle pain and stiffness in the shoulders, upper arms, hip area, and sometimes the neck. Giant cell arteritis causes inflammation of arteries, especially those on each side of the head, scalp, and the aorta (the large artery that carries blood from the heart) and its main branches. The main symptoms of this disorder are: Headaches. Scalp tenderness. Jaw pain. Problems with your eyes, which may