Research Centre for Medical Genetics
1 Moskvorechye St,
Moscow 115522, Russian Federation
Mo-Fr: 9:00 - 17:00
Рус

Cystic Fibrosis Hot Line is 7 years Old

The cystic fibrosis hotline was launched in 2015. It was organized by specialists of the Research Centre for Medical Genetics and Scientific Research Clinical Institute of Childhood of the Ministry of Healthcare of the Moscovskaya Oblast.

The hotline received 586 calls from 18 regions during its first year of work. 4,500 appeals from 65 regions had been registered by 2023. The largest number of appeals comes from Krasnodarskiy Krai, Arkhangelskaya, Kurskaya, Vladimirskaya Oblasts, the Republics of Bashkortostan and Tatarstan. Calls also come from CIS countries: Belarus, Kazakhstan, Uzbekistan.

“Doctors, patients, parents of children with cystic fibrosis contact us at the hotline. Many patients receive treatment information only during hospitalization, which takes place once or twice a year. However, questions arise regularly, and they are answered by doctors of the hotline, who have a lot of experience in the diagnostics and treatment of this disease”, - said Elena Kondratyeva, professor, head of the scientific clinical department for cystic fibrosis at RCMG.

A large number of questions concern molecular as well as prenatal cystic fibrosis diagnostics. Parents of children whose sweat test showed boundary values or neonatal screening data did not give an accurate answer about the diagnosis turn for help to the hot line. Many questions concern the unique functional method of diagnostics - determining the difference of intestinal potentials. This research is carried out by the only institution in Russia - scientific clinical department for cystic fibrosis of the Research Centre for Medical Genetics.

Doctors with many years of experience answer questions:

Anna Voronkova, PhD, leading researcher of the scientific clinical department for cystic fibrosis at RCMG, paediatrician of the department of cystic fibrosis at SRCI of Childhood of the Ministry of Healthcare of Moscovskaya Oblast

Elena Zekaite, PhD, senior researcher of the scientific clinical department for cystic fibrosis at RCMG, paediatrician of the department of cystic fibrosis at SRCI of Childhood of the Ministry of Healthcare of Moscovskaya Oblast

Tatiana Maksimycheva, PhD, senior researcher of the scientific clinical department for cystic fibrosis at RCMG, paediatrician, department of cystic fibrosis at SRCI of Childhood of the Ministry of Healthcare of Moscovskaya Oblast, nutricionist

Irina Fathullina, researcher of the scientific clinical department of cystic fibrosis at RCMG, paediatrician of the department of cystic fibrosis at SRCI of Childhood of the Ministry of Healthcare of Moscovskaya Oblast. 

Specialists consult on the peculiarities of nutrition against the background of the intake of targeted drugs, the prescription of enteral mixtures, the calculation of enzyme therapy, including children who have undergone intestinal resection. In addition, specialists help parents to understand the results of microbiological research, advise doctors on the prescription of antibacterial therapy.

Hotline phone: +7-800-555-87-08

Opening hours: Monday, Tuesday, Thursday, Friday from 10:00 to 12:00 (Moscow time).

Nutricia company and «Ostrova» charity fund support the work of the hotline.