Congress Decisions (Resolution)
News
21.06.2019

Congress Decisions (Resolution)

1.        To recognize the Resolution of the XIII National Congress “Innovative achievements in the diagnosis and therapy of cystic fibrosis” with international participation implemented.

2.        To recognize the work of the Organizing Committee of the National Register of Cystic Fibrosis on the analysis of data of patients with CF in Russia from 2015 to 2017 satisfactory. To provide the RF Ministry of Health with the analysis of CF patients health and organization of care in order to improve the quality of treatment. The results of the work must be reported at conferences at various levels.

3.      To endorse the work of the expert group on the second issue of national consensus on cystic fibrosis. To recommend the use of consensus as the basic document for preparation of clinical recommendations “Cystic Fibrosis in Children and Adults”.

4.      To entrust the FSBI RCMG with development of "Procedure for providing medical care to patients with cystic fibrosis" together with FSBI Central Research Institute for Organization and Informatization of Healthcare (FSBI CRIOIHC) under the RF Ministry of Health and other federal centers for cystic fibrosis diagnosis and treatment, and higher educational medical institutions of the Russian Federation.

5.      To recommend the RF health authorities to arrange centers for adults in the territories based on the experience of the Center at the FSI Research Institute of Pulmonology, Federal Medical Biological Agency of Russia, and also to further expand a network of children's specialized centers and improve their structure.

6.      Implement the provisions of Clinical guidelines: “Cystic fibrosis: epidemiology and control of chronic infection” and “Cystic fibrosis: bacteriological diagnosis of chronic respiratory infection and antibacterial therapy” into practice and inform the health authorities of the Russian Federation territories about the nature of medical care to patients with cystic fibrosis.

7.      To develop standardized conclusions on bacteriological research results issued by various laboratories.

8.      To hold meetings of the working group and bacteriological experts under the chief specialist in medical genetics at least once a year, more often if necessary.

9.      To make a decision about the status approval of "expert laboratory" for microbiological diagnostics of biological fluids of cystic fibrosis patients after the audit by N.F. Gamaleya Federal Research Center for Epidemiology and Microbiology of the RF Ministry of Health representatives and approval at the meeting of the working group and experts-bacteriologists under the chief specialist in medical genetics.

10. To recommend cystic fibrosis regional centers, in the light of available Russian and international positive experience, to arrange regular dynamic monitoring of patients, their examination, routine intravenous antibacterial therapy (without exacerbation), enteral nutrition, kinesitherapy mainly within the outpatient settings.

11. To develop recommendations for granting cystic fibrosis patients a status of “palliative patient”. To create an expert group from among specialists in palliative medicine, cystic fibrosis, and resuscitation physicians for the development of recommendations. To hold a meeting of the working group on cystic fibrosis under the Chief external specialist in medical genetics of the RF Ministry of Health, an expert group to develop recommendations for palliative care for patients with cystic fibrosis with the Chief Specialist in Palliative Medicine of the RF Ministry of Health.

12. To approach the RF Ministry of Health on the matter of consideration the possibility of acquiring targeted pharmacogenetic orphan drugs (CFTR modulators) for patients with cystic fibrosis, primarily those infected with Burkholderia cpacia and mycobacteria that lead to a reduction in the life expectancy of patients if their genotypes are included in such drugs use instructions. To recommend the introduction of targeted pharmacogenetic orphan drugs (CFTR modulators) into the “12 nosologies” Program after their registration in the Russian Federation.

13. To inform cystic fibrosis regional centers about the method of determining intestinal potentials for diagnosing the disease in difficult cases. Now, they have implemented this method at the FSBI RCMG clinical base, at the Cystic Fibrosis Department of the SBIH MR MRCDCC and it became available to all residents of the country -http://mokdcd.ru/pravila-zapisi-na-konsultativnyy-priem-i-v-dnevnoy-stacionar-v-otdelenie-mukoviscidoza. The method also allows evaluating the effectiveness of targeted therapy.

14. To inform cystic fibrosis regional centers about the method of obtaining intestinal organelles using the forskolin test at FSBI RCMG. To recommend the use of the method in the Russian Federation in order to expand the indications for targeted therapy for Russian patients with mutations, that are not specified in the drugs instructions and are not found in other countries, but are characteristic only of the Russian Federation. The appointment for examination shall be possible after the decision of the council involving Golshtein D.V., head of the Stem Cell Laboratory, Kondratyeva E.I., head of the FSBI RCMG Cystic Fibrosis Department, and employees of these units. The attending physician must provide an extract from the medical record and the patient's DNA diagnosis to arrange a council.

15. To inform cystic fibrosis centers of the possibility to carry out an in-depth genetic examination, up to sequencing, in some difficult diagnostic cases at FSBI RCMG. The examination is conducted on free of charge basis for children and adults http://med-gen.ru/docs/nkom-inf-pismo.pdf

16. To recommend continued research on clinical efficacy, safety and reasonable use of drugs for cystic fibrosis patients with timely registration of drugs side effects protocols, in accordance with the order of the RF Ministry of Health as of August 26, 2010 No. 757n, and with a thorough analysis.

17. To recommend the public health managers to focus on training kinesitherapists, nutritionists, specializing in assisting patients with cystic fibrosis, on the bases of federal and regional higher educational institutions and ensure their work at the outpatient and in-patient stage.

18.   To forward an information letter on the use of pancreatic enzymes by the Congress participants to all interested persons and organizations.

19. To continue the work on changing the conditions for the granting of the First group disability to adults with cystic fibrosis, in cooperation with the RF Public Chamber.

20. The XV National Congress on Cystic Fibrosis will be held in April 2021 in Moscow.