Rare bone disorders (RBDs) comprise a heterogeneous group of conditions affecting the development, structure and function of the skeleton. These disorders can lead to significant physical limitations and have a considerable impact on daily activities and quality of life.

Despite advances in medical care, people living with RBDs may face substantial barriers to accessing appropriate rehabilitation and specialised healthcare. These include geographical distances from specialist services, fragmented care pathways, mobility limitations, a shortage of specialised adult care, the absence of condition-specific clinical guidelines and limited access to rehabilitation programmes.

The complexity and diversity of RBDs call for individualised approaches that respond to each person's needs. Innovative solutions are therefore needed to improve access to rehabilitation, support continuity of care and promote more equitable healthcare provision.

Digital technologies offer opportunities to complement conventional rehabilitation and explore new ways of delivering care. Approaches such as Virtual Reality, Videogaming and Telerehabilitation may help bring rehabilitation activities closer to patients, including those who experience difficulties accessing specialised services in person.

Telerehabilitation, in particular, enables rehabilitation services to be delivered remotely, potentially reducing geographical barriers and supporting continuity of care. When combined with personalised exercise programmes, remote monitoring and feedback from healthcare professionals, it may offer new ways to support patients throughout their rehabilitation journey.

However, the feasibility and impact of these approaches need to be assessed in the specific context of rare bone disorders. SPACES addresses this need by investigating digital rehabilitation modalities across different healthcare settings, taking into account the complexity of these conditions and the importance of individualised care.

To address this aim, SPACES focuses on exploring how digital rehabilitation approaches can be adapted to the needs of people living with RBDs and evaluated within different healthcare contexts.

The project seeks to:

SPACES adopts a multidisciplinary approach to investigate digital rehabilitation in people with rare bone disorders. The project brings together clinical expertise, research and patient advocacy to explore approaches that can be adapted to different needs and healthcare settings.

The project's approach combines several complementary elements:

By combining these elements, SPACES aims to investigate how digital tools and coordinated professional input can support personalised rehabilitation, while assessing feasibility and functional health outcomes across different healthcare settings.

SPACES aims to generate evidence on the feasibility and potential benefits of digital rehabilitation for people living with rare bone disorders. The project focuses on outcomes that matter to patients and on the practical considerations involved in integrating these approaches into healthcare services.

The project also aims to develop knowledge that may inform future rehabilitation practices and contribute to more integrated and equitable healthcare systems. Its approach may offer insights relevant to other chronic conditions, although further evaluation would be needed to establish its applicability beyond rare bone disorders.

SPACES follows a structured work plan over 36 months. Further information about the work packages, tasks, milestones and deliverables will be added here.