The CIS Orphan Consortium OMT Working Group has identified priorities

On February 12, 2025 the first meeting of the Working Group on Health Technology Assessment (HTA) and Drug Supply was held within the CIS Orphan Consortium.

The online event brought together 14 experts from Armenia, Kazakhstan, Kyrgyzstan, Russia and Uzbekistan!

They discussed key areas of cooperation, including educational initiatives, unification of methodological approaches and capacity building in the field of HTA and drug supply.

The meeting participants identified key areas for further work:

• HTA methodologies and competency development: Particular attention was paid to training in the basics of HTA, which is especially important for specialists from Uzbekistan and Kyrgyzstan
• Multi-criteria decision analysis (MCDA) for orphan drugs: R. Kazakhstan shared its experience and new assessment tools. It is planned to compare MCDA approaches used in different countries (Kazakhstan, Russia, Turkey, Saudi Arabia, UAE, etc.) and explore the possibility of creating a single MCDA tool for the CIS countries
• Joint clinical evaluation of drugs: European experience will be studied to harmonize methodological approaches and improve the efficiency of drug evaluation in the CIS countries
• Pharmacoeconomics of gene therapy: Both local studies and global experience in assessing the cost-effectiveness of innovative genetic technologies were discussed
• Requirements for the use of real-world clinical practice data (RWE/RWD): The need to develop a unified approach to the use of these data in making decisions on drug financing and reimbursement in the CIS countries is emphasized
• Pharmacovigilance and post-registration monitoring: It is proposed to develop educational programs for the medical community to raise awareness of drug safety monitoring.
• Improvement of the regulatory framework: Gaps in regulation of drug provision for orphan patients in the CIS countries, existing mechanisms were studied and legislative initiatives were developed to improve access to innovative treatment on the platform of the CIS Orphan Consortium.

"This first meeting of the Working Group was an important step towards developing cooperation in the field of HTA and drug provision. We express our sincere gratitude to all participants for the constructive discussion and valuable contribution to the common cause. Together we can improve the lives of patients with rare diseases!", - said Nuria Musina, Executive Director of the CIS Orphan Consortium, Director of International Cooperation NAEREZ .