Russia: Orphan Center of Moscow Region

We continue the series of publications on the work of orphan centers in the CIS countries. Today — Russia: the experience of the Moscow region.

Speaker:

• Andrey Petrovich Prodeus, MD, professor, chief pediatric allergist-immunologist of the Ministry of Health of the Moscow Region, scientific director of the regional center of pediatric allergology and immunology, Research Institute of Childhood, Ministry of Health of the Moscow Region.

The Orphan Center of the Moscow Region is a functionally unifying model of sustainable care.

The center was created on the basis of Research Institute of Childhood and supports about 2,000 children with rare diseases. Priority is cystic fibrosis, congenital immunodeficiencies, metabolic disorders, SMA and other severe nosologies.

• inpatient and outpatient care,
• day hospital,
• laboratory and instrumental monitoring,
• organizational and methodological support,
• routing of patients throughout the regional healthcare system.

The model is based on the understanding that not every region should have specialists in all rare diseases. It is more effective when individual centers take on the support of specific groups of nosologies - for example, immune, metabolic or neurological - and provide methodological and expert support to other entities. This ensures the quality and depth of care without unnecessary duplication of resources.

One of the key challenges remains the provision of basic medical care. Patients with rare diseases often cannot receive treatment from dentists, ophthalmologists, orthopedists and other specialists. The reason is a lack of knowledge, fear of complex diagnoses and a lack of understanding of the specifics of managing such patients. Without clearly structured routing, they are excluded from the system.

The center takes on coordination functions, including organizing routing, clinical support, monitoring the effectiveness of therapy and timely correction if necessary. This is especially important in life-threatening situations, where the speed of decision-making is critical.

• training and methodological support for doctors in the region,
• participation in clinical and scientific research,
• interaction with funds and the social support system,
• maintaining registers and analyzing the effectiveness of assistance.

Andrey Petrovich Prodeus: "If the regional healthcare system can provide high-quality assistance to patients with rare diseases, then it can cope with more common pathologies. This is a direct indicator of the maturity and quality of medical care in the region"

In the next post - the experience of Moscow