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A systematic review about the current evidence about effective rehabilitation for children with rare bone diseases

Project leader

Ariane Kwiet, dr.med

Abstract

Rationale for the review

Children with rare bone disease need rehabilitation in different situation throughout childhood, after surgery or trauma, when experiencing loss of function, or when facing changes in daily functioning, pain, fatigue, or difficulties participating in school and leisure activities. Pharmacological and surgical treatments have been the main focus of research, but in the last years, more and more focus is been given to rehabilitation services, including physical therapy, occupational therapy, exercise programs, orthotic devices, and psychosocial support. However, current evidence regarding the effectiveness and safety of rehabilitation interventions for rare bone diseases is scattered and inconsistent. A systematic review is therefore needed to synthesize the available data and guide clinical practice.

Review objectives

Primary: To identify and synthesize evidence on rehabilitation interventions for children with rare bone diseases.

Secondary: To explore outcomes related to function, participation, quality of life, and adverse events.

Research group menbers

Projectleader

Ariane Kwiet 

Senior Consultant / dr.med, Norwegian Centre for Rare Diseases, unit Sunnaas.

Project employees

Trine Bathen, Occupational Therapy Specialist / MSc, Norwegian Centre for Rare Diseases, unit Sunnaas.
 
Kristin Schewe Loxley, Occupational Therapy Specialist / MSc, Norwegian Centre for Rare Diseases, unit Sunnaas.

Hilde Strømme, Academic Librarian, Library of Medicine and Science at University of Oslo.

Study Protocol

Study protocol is registered in PROSPERO

 

Sist oppdatert 19.03.2026