welcome to DuchenneXchange- a positively charged Duchenne muscular dystrophy community.
- join today!
Duchenne Muscular Dystrophy < 18y in Norway: Genotype/Phenotype, Growth, Puberty, Bone Health and Quality of Life
study id #: NCT01963897
condition: Duchenne Muscular Dystrophy
The study will give a consent based epidemiological overview of Norwegian patients with Duchenne muscular dystrophy younger than 18 years of age. Genotype of the population will be described. Longitudinal development of growth, bone health, and , when applicable, puberty over a two year period will be studied. Questionnaires regarding quality of life will also be an important part of the study.
mechanism of action: No pharmaceutical intervention
last updated: November 22, 2018
start date: August 2013
estimated completion: June 2017
size / enrollment: 73
The participants who are not regularly seen at our regional hospital, are recruited via their local neuropediatrician. Patients who do not come to our region hospital will be seen at their local hospital.Each participant will be seen up to three times with one year between each visit. The visits include clinical examination, DXA scan, x-ray for bone age, and blood tests including several parameters related to bone health, growth and puberty. Standardized questionnaires regarding quality of life (patients and parents) will be used, and certain questions regarding the importance of achieving normal height and puberty will be added. Additional anamnestic data will be retrieved from the patients' medical records.
- Genotype [ Time Frame: 1 day (At first visit) ]
Specific description of mutation
• Diagnosis of Duchenne muscular dystrophy
• Age under 18 years
• Residing in Norway
Live inspiredLearning your child has a terminal illne...
New Duchenne/Becker ICD Code in Effect Today — G71.01Today at 12:01 AM – while most of us...
Duchenne Care Video 19: Transitionhttps://www.youtube.com/watch?v=PJvffcXM...
Bone Health in Children with Duchenne Muscular Dystrophy: A ReviewDuchenne muscular dystrophy (DMD) patien...
The Validation Process for Confirmation of the French Version of the Pediatric Quality of Life Inventory (PedsQLTM)There isn't specific Health related qual...
Longitudinal Study of the Natural History of Duchenne Muscular Dystrophy (DMD)The purpose of this study is to establis...
joinourboysThe Join Our Boys Trust’s ultimate aim...