Expertise and support for innovation

We bring together multidisciplinary expertise in rare diseases to support the development and implementation of new technologies for diagnostics, treatment, and rehabilitation, as well as related organizational and digital solutions in the CIS countries.

CIS Orphan Consortium Expert Platform

The Expert Platform is a single point of interaction for medical technology developers, research and clinical teams, patient organizations, and other participants involved in the creation and implementation of solutions for rare diseases. The platform helps build the path from scientific or technological development to practical application in the healthcare system, taking into account clinical, regulatory, and organizational requirements.

Expert Consultations for Technology Developers

We organize consultations for teams developing technologies for the diagnosis, treatment, and rehabilitation of rare diseases at key stages of their development: formulating the clinical problem and target population, choosing an evidence generation strategy, identifying clinically significant outcomes, planning pilot implementation, and subsequent monitoring in real-world practice.

Particular attention is paid to technologies requiring adaptation to small patient populations, a high degree of personalization, and integration into existing care pathways.

Regulatory and Ethical Aspects of Innovative Technologies

The platform supports developers and research teams in addressing regulatory and ethical issues related to the implementation of new diagnostic, therapeutic, and rehabilitation solutions: personal data protection, informed consent, appropriate use of clinical information, interaction with clinicians and patient communities, and preparation of materials for expert discussions and workshops.

Methodological Support for Research and Evidence Base

We facilitate the formation of a sound evidence base for new technologies: designing clinical and observational studies, creating and developing registries, using real-world clinical data, selecting and standardizing clinical and functional outcomes, and developing approaches to assessing efficacy and safety after implementation.

Support for Organizational and Digital Solutions

To ensure successful implementation of technologies, we facilitate the development and testing of organizational and digital components: care pathways, reference centers and networks, integration of diagnostic and rehabilitation solutions into clinical practice, outcome monitoring systems, telemedicine scenarios, and clinical decision support tools.

End-to-End Approach

We work to ensure that technology, clinical practice, and care organization develop in concert and are focused on real-world implementation and measurable results.

Patient Engagement and Solution Co-Creation

Patient communities participate in setting priorities, selecting meaningful outcomes, and assessing the applicability of new diagnostic, therapeutic, and rehabilitation technologies in real-life settings. We support their participation as an integral part of the development and implementation of solutions.

Solution Interoperability and Scalability

The platform facilitates the development of comparable approaches and standards that enable the scaling of solutions across centers and countries and ensure the comparability of implementation results.

Practical Materials

We are building a library of applied and methodological materials for developers and project teams: standard protocol and registry structures, recommendations for building an evidence base for rare disease technologies, approaches to selecting clinical and functional outcomes, and materials on organizational and digital solutions.

Contact the platform

If you are developing a technology for the diagnosis, treatment, or rehabilitation of rare diseases and are planning a research project, pilot, or clinical implementation, please describe the task and expected outcome. We will offer a format for interaction: an expert consultation, a thematic working group, or a joint solution design session.