Adapted Physical Activity Program (APA) for Effort Rehabilitation of Children and Teenagers With Osteogenesis Imperfecta

NCT ID: NCT05927389

Last Updated: 2024-02-29

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

30 participants

Study Classification

INTERVENTIONAL

Study Start Date

2024-02-26

Study Completion Date

2026-07-15

Brief Summary

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This research study aims to evaluate the effect of a 6-month adapted physical activity program (APA) on the endurance capacities (evaluated as the maximum oxygen consumption \[VO2 peak\]) of children and adolescents with Osteogenesis Imperfecta.

Detailed Description

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Osteogenesis Imperfecta (OI) is a rare genetic disease characterised mainly by bone fragility, decreased bone mass and a susceptibility to fractures of varying severity. Different forms have been described according to the severity of the bone manifestations. Although it is a genetically heterogeneous disease, approximately 90% of OI patients have a mutation in the gene encoding gene encoding type 1 collagen, a major component of the extracellular matrix.

Chronic fatigue and decreased physical endurance are almost constant complaints of patients with OI (more than 95% according to some studies), which impacts the activities of daily living and quality of life of these patients. The causes of this decrease in endurance are multifactorial involving prolonged immobilisation secondary to fractures, chronic osteoarticular pain, but also primary muscle damage.

Mechanography studies carried out in children with OI have shown a significant deficit in muscle function in terms of both strength and power.

In healthy adults, physical inactivity is an important predictor of feeling of tired. In addition, in some chronic diseases (such as multiple sclerosis, rheumatoid arthritis or systemic lupus erythematosus), physical activity and training have been shown to be effective in improving muscle strength and functional capacity as well as fatigue and quality of life. In OI, it has been reported that physical activity improves muscle function and bone mass. Patients with OI should therefore benefit from a regular exercise programme taking into account their risk of fracture.

This study aims to evaluate the effect of a life-skills physical activity (LSPA) programme on the endurance capacities and quality of life of children and adolescents with OI.

The VO2 peak evolution will be evaluated after 6 months of program. This is a recognized parameter for the evaluation of endurance and has been validated in children. The hypothesis of this study is that the implementation of a physical activity program adapted to the daily life and interests of the child with OI will efficiently improve endurance, prevent deconditioning and promote long term benefits.

Conditions

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Osteogenesis Imperfecta

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

PREVENTION

Blinding Strategy

NONE

Study Groups

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Experimental group: 6 months APA program

The various assessments will be carried out during 2 visits at 6 months interval as part of the usual follow-up at the "Constitutional Bone Diseases" unit at the Toulouse University Hospital.

The APA program built from the initial assessment will be returned to the child and his family during a videoconference.

In addition, a regular reassessment and adjustment of this program will be made every 15 days during phone calls by the APA coach.

Group Type EXPERIMENTAL

Adapted Physical Activity program

Intervention Type OTHER

The Adaptated Physical Activity program consists of a Personalized Training Program adapted to each patient's condition and capacities

Interventions

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Adapted Physical Activity program

The Adaptated Physical Activity program consists of a Personalized Training Program adapted to each patient's condition and capacities

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Diagnosed Osteogenesis Imperfecta
* Informed and written consent signed by at least one of the two holders of parental authority
* Patient affiliated to a social security scheme or equivalent

Exclusion Criteria

* Non-walking children (unable to perform the effort test)
* Pregnant or breastfeeding
* Participation in other interventional research
Minimum Eligible Age

7 Years

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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University Hospital, Toulouse

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Thomas EDOUARD, MD

Role: PRINCIPAL_INVESTIGATOR

University Hospital, Toulouse

Locations

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CHU Montpellier Hôpital Arnaud de Villeneuve

Montpellier, , France

Site Status NOT_YET_RECRUITING

CHU Toulouse

Toulouse, , France

Site Status RECRUITING

Countries

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France

Central Contacts

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Thomas EDOUARD, MD

Role: CONTACT

05 61 77 61 10

Marjolaine WILLEMS, MD

Role: CONTACT

Facility Contacts

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Marjolaine WILLEMS, MD

Role: primary

Role: backup

Thomas EDOUARD, MD

Role: primary

05 61 77 61 10

References

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Sillence DO, Senn A, Danks DM. Genetic heterogeneity in osteogenesis imperfecta. J Med Genet. 1979 Apr;16(2):101-16. doi: 10.1136/jmg.16.2.101.

Reference Type BACKGROUND
PMID: 458828 (View on PubMed)

Rossi V, Lee B, Marom R. Osteogenesis imperfecta: advancements in genetics and treatment. Curr Opin Pediatr. 2019 Dec;31(6):708-715. doi: 10.1097/MOP.0000000000000813.

Reference Type BACKGROUND
PMID: 31693577 (View on PubMed)

Monti E, Mottes M, Fraschini P, Brunelli P, Forlino A, Venturi G, Doro F, Perlini S, Cavarzere P, Antoniazzi F. Current and emerging treatments for the management of osteogenesis imperfecta. Ther Clin Risk Manag. 2010 Sep 7;6:367-81. doi: 10.2147/tcrm.s5932.

Reference Type BACKGROUND
PMID: 20856683 (View on PubMed)

Arponen H, Waltimo-Siren J, Valta H, Makitie O. Fatigue and disturbances of sleep in patients with osteogenesis imperfecta - a cross-sectional questionnaire study. BMC Musculoskelet Disord. 2018 Jan 8;19(1):3. doi: 10.1186/s12891-017-1922-5.

Reference Type BACKGROUND
PMID: 29310646 (View on PubMed)

Harsevoort AGJ, Gooijer K, van Dijk FS, van der Grijn DAFM, Franken AAM, Dommisse AMV, Janus GJM. Fatigue in adults with Osteogenesis Imperfecta. BMC Musculoskelet Disord. 2020 Jan 3;21(1):6. doi: 10.1186/s12891-019-3000-7.

Reference Type BACKGROUND
PMID: 31900144 (View on PubMed)

Other Identifiers

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RC31/23/0248

Identifier Type: -

Identifier Source: org_study_id

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