A5028572631- Cerebral Palsy and Movement Disorders
- Sleep and related disorders
- Vascular Malformations and Hemangiomas
- Infant Development and Preterm Care
- Spondyloarthritis Studies and Treatments
- Childhood Cancer Survivors' Quality of Life
- Parkinson's Disease and Spinal Disorders
- Myasthenia Gravis and Thymoma
- Family and Disability Support Research
- Health Systems, Economic Evaluations, Quality of Life
- Delphi Technique in Research
- Peripheral Neuropathies and Disorders
- Autoimmune and Inflammatory Disorders Research
GroundMetrics (United States)
2022-2023
Patients with generalized myasthenia gravis (gMG) experience functional impairment due to MG symptoms. This study aimed assess, from the patient perspective, symptoms, impacts, and treatment goals of individuals diagnosed gMG. Semi-structured, in-depth concept-elicitation interviews were conducted 28 gMG in United States. Participants reported symptoms that affected many body regions functions, an average 16 per participant. The most frequently eyelid drooping (93%), physical fatigue (89%),...
Abstract Purpose This qualitative study (GSK study: 213635) was designed to better understand sleep disturbance as experienced by individuals with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA), and the relationship between pain other aspects of disease activity. Methods Sixty-minute, one-on-one, concept elicitation interviews were conducted 30 participants (15 RA 15 axSpA) from US. Interviews audio-recorded transcribed verbatim. Interview transcripts coded analyzed explore...
Mapping or matching the items in a clinical outcome assessment (COA) to concepts that define condition is common method for evaluating COA's concept coverage. The purpose of this research was address lack formal guidance conducting task by developing framework best practices COA mapping and applying it case study. To develop framework, we examined literature created draft set which then reviewed experienced researchers through focus groups before being finalized. conduct study, extracted...
PIK3CA-Related Overgrowth Spectrum (PROS) are rare syndromes caused by a mutation in the PIK3CA gene, including fibroadipose hyperplasia or overgrowth; congenital lipomatous overgrowth, vascular malformations, epidermal nevi, scoliosis/skeletal and spinal (CLOVES); megalencephaly-capillary malformation (MCAP M-CM); fibro-adipose anomaly (FAVA); Klippel-Trenaunay syndrome (KT; also known as, Klippel-Trenaunay-Weber syndrome); capillary, lymphatic, venous malformations (CLVM); lymphatic (LM)....