Osteogenesis Imperfecta
Conditions
Keywords
osteogenesis imperfecta, Adapted sport, Quality of life
Brief summary
Osteogenesis imperfecta (OI) is a rare genetic disorder of increased bone fragility and low bone mass. It is conceivable that children and adolescents with OI are less active than healthy peers because of frequent fractures, immobilization,functionals limitations and no adapted physicals activity(APA). The hypothesis is that an Adapted physique activity could improve access of activity for patients with Osteogenesis Imperfecta (OI). The aim of the study is to evaluate benefice of APA,improve aerobic capacity, cardiovascular and bone benefits, and gain of quality of life. Children with OI between 6 and 18 years old will have a program of supervised adapted training program during one year. The program is adapted at each individual and without risk for the patient.
Interventions
OTHERAdapted sports practices
Adapted sports practices for 30 minutes twice a week
Sponsors
Hospices Civils de Lyon
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
PREVENTION
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
6 Years to 17 Years
Healthy volunteers
No
Inclusion criteria
* Child with osteogenesis imperfecta * Child followed in the Reference centre for constitutional bone diseases in the Hôpital Femme Mère Enfant * Parent (s) / legal guardian who has been informed of the study and has accepted participation in the study by signing the consent. * Patient benefiting from a social security scheme
Exclusion criteria
* Medical and surgical contraindications to adapted physical activity.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 6 minutes walk test | Month 0 | Distance traveled (in meters) in 6 minutes |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Height | Month 0 | Size in meter measured with a meter |
| body mass index | Month 0 | calculated with weight and height |
| blood pressure | Month 0 | measurement of blood pressure (cm Hg) |
| phosphocalcic biologic parameters | Month 0 and Month 12 | Ionosodium (mmol/L) |
| ration lean mass / fat mass | Month 0 | Dual-energy X-ray absorptiometry (DXA) |
| Respiratory Functional Exploration | Month 0 | — |
| Thickness intima / media | Month 0 | echography |
| Weight | Month 0 | weight in kilograms will be measured with a scale |
| Parameters of the connected watch : distance traveled | Month 0 and Month 6 and Month 12 | data recovery of the connected watch |
| Parameters of the connected watch : calories consumption | Month 0 and Month 6 and Month 12 | data recovery of the connected watch |
| Ratio thickness intima / media | Month 12 | echography |
| Bone mineral density | Month 0 | Dual-energy X-ray absorptiometry (DXA) |
| Number of new fractures | Month 1 | — |
| Quality of life questionnaire : PedsQL | Month 0 | Measurement Model for the Pedratric Quality of Life Inventory The 4 Multidimensional Scales and 3 Summary Scores are Scales Physical Functioning (8 items) Emotional Functioning (5 items) Social Functioning (5 items) School Functioning (5 items) Summary Scores Total Scale Score (23 items) Physical Health Summary Score (8 items) Psychosocial Health Summary Score (15 items) |
| Parameters of the connected watch : number of steps | Month 0 and Month 6 and Month 12 | data recovery of the connected watch |
Countries
France
Outcome results
None listed