National Pediatric Center of FMF

Periodic Disease or Familial Mediterranean Fever is considered an ethnic disease for the Armenian population and has a high frequency of carrying MEFV gene mutations (1 : 3 - 4). The FMF usually manifests in childhood.

In Armenia, starting from 80s, the Department of Pediatrics of the Yerevan State Medical University has been engaged in the study of FMF in children under the leadership of the head of the department, corresponding member of the USSR Academy of Medical Sciences, Professor V. A. Astvatsatryan. Later, in 1998, by the decision of the Ministry of Health of the RA, the National Pediatric Center of FMF was formed as a part of “Arabkir” MC-ICAH.

The NPC of FMF aims at prevention of FMF complications in children by organizing early diagnosis, dispensary monitoring and continuous treatment. Since 2003, the NPC of FMF has been implementing the “Early diagnosis and treatment of FMF in children” long-running project under the patronage of the MOH of the RA, cooperating with YSMU and the Center of Medical Genetics /CMG/. In 2003-2015 the program was also sponsored by the “Howard Karagheusian” Medical Benevolent Public Organization. Within the framework of the project, more than 3400 children with FMF are being monitored at the dispensary and treated continuously with colchicine until they reach the age of 18 (under the state order).

Fields of activity of NPC of FMF

NPC of FMF carries out professional work in the following directions:

Medical`

inpatient - at the General Pediatric Department of “Arabkir” MC-ICAH the final diagnosis of FMF patients is determined and colchicine treatment is started.
outpatient, where following services are provided:

1. Dispensary monitoring of FMF

The dispensary care of FMF patients is carried out in the dispensary of the NPC of FMF, under the state order. Currently, 3450 patients with FMF under 18 are registered at the dispensary. The latter includes medical counseling (2-3 times a year), examination and continuous colchicine treatment until the age of 18. The Ministry of Health of the RA provides quality colchicine of Armenian production /ArpiMed Pharmaceutical Company/ to FMF patients under 18 registered at the dispensary.

2. Outpatient counseling of patient with suspected FMF and visits to the regions of Armenia for preliminary detection of children with suspected FMF and for referral to “Arabkir” MC final diagnosis

Scientific`

scientific research related to FMF (in particular, research of FMF cases with atypical course, combined with other autoimmune diseases, the epidemiology of cases, study of complications, such as kidney amyloidosis, adhesion-related disorder)
implementation of FMF scientific projects and cooperation with international organizations (ISSAIDs, PRINTO, PReS, ESPGHAN), as well as YSMU and CMG. In particular, since 2013, the “FMF in children: atypical type, clinical and genetic features of complicated FMF cases and cases combined with immune diseases” project has been implemented jointly
participation in international congresses and conferences related to FMF and autoimmune diseases
publication of scientific articles
defense of scientific theses

Educational, methodical, organizational

regular visits to the regions of the RA and the Republic of Artsakh (together with the Armenian Pediatric Association, APA), lectures and practical training for medical personnel (together with YSMU), talks with parents, open-days (examination of suspected FMF patients)
participation in APA pediatric schools and YSMU conferences (lectures, FMF case discussions).
development and publication of guidelines, manuals, fact-sheets

1. for doctors, nurses, clinical residents (in Armenian, Russian)

2. for patients and their parents

Achievements of the NPC of FMF thanks to the “Early diagnosis of FMF in children and regular treatment with colchicine” long-running project.

A significant decrease of kidney amyloidosis, the main complication of FMF, over the past 17 years. From 2003 to 2020, only 0.075% of patients had kidney amyloidosis as a complication. In the recent past, in the absence of colchicine treatment and monitoring of the disease, amyloidosis occurred in 16.2% of FMF patients under 15.
Improvement of FMF early diagnosis: since 2003, the total number of FMF patients under 18 monitored at the dispensary has increased 6-7 times (from 500 up to 3400 children), and the number of new cases registered annually reaches about 300-350.
Improving the information and applicability of FMF of the national population.
Regular continuous monitoring of FMF patients according to international guidelines and provision of free treatment with colchicine (>1 000 000 tab/year; 1mg).
Improvement of physical growth and development of children with FMF registered in dispensary care.
Regular genetic tests at the Center of Medical Genetics.
Cooperation with international organizations (PRINTO, ISSAID, PRES, ESPGHAN) and countries (Italy, France, Israel).
Diagnosis and monitoring of FMF with atypical course and/or with other autoimmune disorders (rheumatoid arthritis, PFAPA, inflammatory bowel disease, celiac disease , non-amyloid glomerulopathy, etc).

The implementation of the program to improve diagnosis, management and monitoring of FMF in children is a result and an example of effective cooperation between the Government of the RA (MOH), the Diaspora community (’Howard Karagheusian” Foundation) and educational (YSMU), scientific-research (Center of Medical Genetics), clinical (“Arabkir” MC-ICAH NPC of FMF) organizations.

NPC of FMF plans to:

1. continue the project of early diagnosis and treatment with colchicine of children with FMF, because the number of patients continues to increase

2. continue scientific research works
- atypical FMF cases, including clinical and genetic features of MEFV heterozygotes

- FMF cases with other autoimmune disorders (rheumatoid arthritis, PFAPA, inflammatory bowel disease, celiac disease , vasculitis, nephritis, etc)

3. update the children’s register of FMF

NPC of FMF provides services to:

citizens of the RA under 18 within the framework of the state order approved by the Ministry of Health
citizens of CIS countries are served on a paid basis or within the framework of existing humanitarian projects
FMF patients with renal complications, who are monitored together with a nephrologist

Our personnel

G. G. Amaryan, head of the NPC of FMF, Professor, MD of the Department of Pediatrics N2, YSMU,
N. G. Mkrtchyan, coordinator of the NPC of FMF Dispensary service, Assistant Professor of the Department of Pediatrics N2, YSMU
H. G. Sargsyan, Assistant Professor of the Department of Pediatrics N2, YSMU
S. G. Sargsyan, Assistant Professor of the Department of Pediatrics N2, YSMU, head of the Institute of Child and Adolescent Health of “Arabkir” MC
K. G. Mirzabekyan, PhD, head of the General Pediatric Department of the ”Arabkir” MC-ICAH
R. Y. Davtyan, physician at the General Pediatric Department of the ”Arabkir” MC-ICAH
M. M. Papazyan, PhD, physician at the Nephrology Department of “Arabkir” MC-ICAH
L. Galstyan, A. Babayan, nurses at the FMF Dispensary

Cooperation

Ministry of Health of the RA (provided free of charge outpatient (dispensary) follow up service of children of NPC FMF until age of 18 y. within the state of beneficial package)
“Howard Karagheusian” Medical Benevolent Public Organization, 2003 – 2015
Yerevan State Medical University after M. Heratsi
Armenian Pediatric Association
Center of Medical Genetics and Primary Health Care
Consortium of Armenian Physicians Researching FMF
“ArpiMed” Pharmaceutical Company

International organizations
- PRINTO (Pediatric rheumatology international trials organization )
- ISSAID (International Society of Auto inflammatory Diseases)
- PReS (Pediatric Rheumatology European Society)
- ESPGHAN (European Society of Pediatric Gastroenterology, Hepatology, Nutrition)