3 research outputs found
Π Π΅Π³ΠΈΡΡΡΡ Π±ΠΎΠ»ΡΠ½ΡΡ ΠΌΡΠΊΠΎΠ²ΠΈΡΡΠΈΠ΄ΠΎΠ·ΠΎΠΌ: ΠΎΡΠ΅ΡΠ΅ΡΡΠ²Π΅Π½Π½ΡΠΉ ΠΈ Π·Π°ΡΡΠ±Π΅ΠΆΠ½ΡΠΉ ΠΎΠΏΡΡ
Cystic fibrosis is a multi-organ genetic disease that reduces life expectancy and requires costly complex therapy. The economic burden of cystic fibrosis is determined by the cost of treatment, the conditions for optimizing medical technologies based on epidemiological knowledge of the disease course nature and the therapy effectiveness. In many countries cystic fibrosis patient registries have been created that allow to assess the quality, efficiency and optimality of medical care. Registries are formed at the regional, national, and international levels, which facilitates the collection of complete and reliable patient information for subsequent analysis, comparison and synthesis of clinical and epidemiological indicators. The review is devoted to the actual principles of organization of domestic and some foreign cystic fibrosis patient registries. The article selectively provides examples of information from registries. The application of positive experience of the work of foreign registries in Russia can improve the quality of medical care for patients with cystic fibrosis.ΠΡΠΊΠΎΠ²ΠΈΡΡΠΈΠ΄ΠΎΠ· β ΠΏΠΎΠ»ΠΈΠΎΡΠ³Π°Π½Π½ΠΎΠ΅ Π³Π΅Π½Π΅ΡΠΈΡΠ΅ΡΠΊΠΎΠ΅ Π·Π°Π±ΠΎΠ»Π΅Π²Π°Π½ΠΈΠ΅, ΡΠΎΠΊΡΠ°ΡΠ°ΡΡΠ΅Π΅ ΠΏΡΠΎΠ΄ΠΎΠ»ΠΆΠΈΡΠ΅Π»ΡΠ½ΠΎΡΡΡ ΠΆΠΈΠ·Π½ΠΈ ΠΈ ΡΡΠ΅Π±ΡΡΡΠ΅Π΅ Π·Π°ΡΡΠ°ΡΠ½ΠΎΠΉ ΠΊΠΎΠΌΠΏΠ»Π΅ΠΊΡΠ½ΠΎΠΉ ΡΠ΅ΡΠ°ΠΏΠΈΠΈ. ΠΠΊΠΎΠ½ΠΎΠΌΠΈΡΠ΅ΡΠΊΠΎΠ΅ Π±ΡΠ΅ΠΌΡ ΠΌΡΠΊΠΎΠ²ΠΈΡΡΠΈΠ΄ΠΎΠ·Π° ΠΎΠΏΡΠ΅Π΄Π΅Π»ΡΠ΅ΡΡΡ ΡΡΠΎΠΈΠΌΠΎΡΡΡΡ Π»Π΅ΡΠ΅Π½ΠΈΡ, ΡΡΠ»ΠΎΠ²ΠΈΡΠΌΠΈ ΠΎΠΏΡΠΈΠΌΠΈΠ·Π°ΡΠΈΠΈ ΠΌΠ΅Π΄ΠΈΡΠΈΠ½ΡΠΊΠΈΡ
ΡΠ΅Ρ
Π½ΠΎΠ»ΠΎΠ³ΠΈΠΉ Π½Π° ΠΎΡΠ½ΠΎΠ²Π°Π½ΠΈΠΈ ΡΠΏΠΈΠ΄Π΅ΠΌΠΈΠΎΠ»ΠΎΠ³ΠΈΡΠ΅ΡΠΊΠΈΡ
Π·Π½Π°Π½ΠΈΠΉ ΠΎ Ρ
Π°ΡΠ°ΠΊΡΠ΅ΡΠ΅ ΡΠ΅ΡΠ΅Π½ΠΈΡ Π·Π°Π±ΠΎΠ»Π΅Π²Π°Π½ΠΈΡ ΠΈ ΡΠ΅Π·ΡΠ»ΡΡΠ°ΡΠΈΠ²Π½ΠΎΡΡΠΈ ΠΏΡΠΎΠ²ΠΎΠ΄ΠΈΠΌΠΎΠΉ ΡΠ΅ΡΠ°ΠΏΠΈΠΈ. ΠΠΎ ΠΌΠ½ΠΎΠ³ΠΈΡ
ΡΡΡΠ°Π½Π°Ρ
ΡΠΎΠ·Π΄Π°Π½Ρ ΡΠ΅Π³ΠΈΡΡΡΡ Π±ΠΎΠ»ΡΠ½ΡΡ
ΠΌΡΠΊΠΎΠ²ΠΈΡΡΠΈΠ΄ΠΎΠ·ΠΎΠΌ, ΠΏΠΎΠ·Π²ΠΎΠ»ΡΡΡΠΈΠ΅ ΠΎΡΠ΅Π½ΠΈΠ²Π°ΡΡ ΠΊΠ°ΡΠ΅ΡΡΠ²ΠΎ, ΡΡΡΠ΅ΠΊΡΠΈΠ²Π½ΠΎΡΡΡ ΠΈ ΠΎΠΏΡΠΈΠΌΠ°Π»ΡΠ½ΠΎΡΡΡ ΠΌΠ΅Π΄ΠΈΡΠΈΠ½ΡΠΊΠΎΠΉ ΠΏΠΎΠΌΠΎΡΠΈ. Π Π΅Π³ΠΈΡΡΡΡ ΡΡΠΎΡΠΌΠΈΡΠΎΠ²Π°Π½Ρ Π½Π° ΡΠ΅Π³ΠΈΠΎΠ½Π°Π»ΡΠ½ΠΎΠΌ, Π½Π°ΡΠΈΠΎΠ½Π°Π»ΡΠ½ΠΎΠΌ ΠΈ ΠΌΠ΅ΠΆΠ΄ΡΠ½Π°ΡΠΎΠ΄Π½ΠΎΠΌ ΡΡΠΎΠ²Π½ΡΡ
, ΡΡΠΎ ΡΠΏΠΎΡΠΎΠ±ΡΡΠ²ΡΠ΅Ρ ΡΠ±ΠΎΡΡ ΠΏΠΎΠ»Π½ΡΡ
ΠΈ Π΄ΠΎΡΡΠΎΠ²Π΅ΡΠ½ΡΡ
ΡΠ²Π΅Π΄Π΅Π½ΠΈΠΉ ΠΎ Π±ΠΎΠ»ΡΠ½ΡΡ
Π΄Π»Ρ ΠΏΠΎΡΠ»Π΅Π΄ΡΡΡΠ΅Π³ΠΎ Π°Π½Π°Π»ΠΈΠ·Π°, ΡΡΠ°Π²Π½Π΅Π½ΠΈΡ ΠΈ ΠΎΠ±ΠΎΠ±ΡΠ΅Π½ΠΈΡ ΠΊΠ»ΠΈΠ½ΠΈΠΊΠΎ-ΡΠΏΠΈΠ΄Π΅ΠΌΠΈΠΎΠ»ΠΎΠ³ΠΈΡΠ΅ΡΠΊΠΈΡ
ΠΏΠΎΠΊΠ°Π·Π°ΡΠ΅Π»Π΅ΠΉ. ΠΠ±Π·ΠΎΡ ΠΏΠΎΡΠ²ΡΡΠ΅Π½ Π°ΠΊΡΡΠ°Π»ΡΠ½ΡΠΌ Π½Π° ΡΠ΅Π³ΠΎΠ΄Π½ΡΡΠ½ΠΈΠΉ Π΄Π΅Π½Ρ ΠΏΡΠΈΠ½ΡΠΈΠΏΠ°ΠΌ ΠΎΡΠ³Π°Π½ΠΈΠ·Π°ΡΠΈΠΈ ΠΎΡΠ΅ΡΠ΅ΡΡΠ²Π΅Π½Π½ΡΡ
ΠΈ Π½Π΅ΠΊΠΎΡΠΎΡΡΡ
Π·Π°ΡΡΠ±Π΅ΠΆΠ½ΡΡ
ΡΠ΅Π³ΠΈΡΡΡΠΎΠ² Π±ΠΎΠ»ΡΠ½ΡΡ
ΠΌΡΠΊΠΎΠ²ΠΈΡΡΠΈΠ΄ΠΎΠ·ΠΎΠΌ. Π ΡΡΠ°ΡΡΠ΅ Π²ΡΠ±ΠΎΡΠΎΡΠ½ΠΎ ΠΏΡΠΈΠ²ΠΎΠ΄ΡΡΡΡ ΠΏΡΠΈΠΌΠ΅ΡΡ ΡΠ²Π΅Π΄Π΅Π½ΠΈΠΉ, ΡΠΎΠ΄Π΅ΡΠΆΠ°ΡΠΈΡ
ΡΡ Π² ΡΠ΅Π³ΠΈΡΡΡΠ°Ρ
. ΠΡΠΈΠΌΠ΅Π½Π΅Π½ΠΈΠ΅ ΠΏΠΎΠ»ΠΎΠΆΠΈΡΠ΅Π»ΡΠ½ΠΎΠ³ΠΎ ΠΎΠΏΡΡΠ° ΡΠ°Π±ΠΎΡΡ Π·Π°ΡΡΠ±Π΅ΠΆΠ½ΡΡ
ΡΠ΅Π³ΠΈΡΡΡΠΎΠ² Π² Π ΠΎΡΡΠΈΠΈ ΠΌΠΎΠΆΠ΅Ρ ΡΠ»ΡΡΡΠΈΡΡ ΠΊΠ°ΡΠ΅ΡΡΠ²ΠΎ ΠΌΠ΅Π΄ΠΈΡΠΈΠ½ΡΠΊΠΎΠΉ ΠΏΠΎΠΌΠΎΡΠΈ Π±ΠΎΠ»ΡΠ½ΡΠΌ ΠΌΡΠΊΠΎΠ²ΠΈΡΡΠΈΠ΄ΠΎΠ·ΠΎΠΌ.
Cystic Fibrosis Patient Registries: Domestic and Foreign Experience
Cystic fibrosis is a multi-organ genetic disease that reduces life expectancy and requires costly complex therapy. The economic burden of cystic fibrosis is determined by the cost of treatment, the conditions for optimizing medical technologies based on epidemiological knowledge of the disease course nature and the therapy effectiveness. In many countries cystic fibrosis patient registries have been created that allow to assess the quality, efficiency and optimality of medical care. Registries are formed at the regional, national, and international levels, which facilitates the collection of complete and reliable patient information for subsequent analysis, comparison and synthesis of clinical and epidemiological indicators. The review is devoted to the actual principles of organization of domestic and some foreign cystic fibrosis patient registries. The article selectively provides examples of information from registries. The application of positive experience of the work of foreign registries in Russia can improve the quality of medical care for patients with cystic fibrosis
Real-world study of efficacy, risk management and reasons for discontinuation of natalizumab for treatment of multiple sclerosis in Russia.
BackgroundNTZ is approved in Russia for the treatment of highly active relapsing remitting multiple sclerosis and is reimbursed via federal budget program. However, no data about NTZ treatment in Russia and the effect of federal reimbursement have been performed so far.ObjectiveTo characterize the population of patients receiving natalizumab and assess the efficacy and risk-management plan (RMP) implementation of NTZ therapy in routine clinical practice in Russia.MethodsWe analyzed data for 334 patients, who received at least one infusion of NTZ. Relapse rate, MRI activity, NEDA-3 status after 2 years were assessed. Anti-JC virus antibodies status and RMP implementation were evaluated. Drop-out rate and reasons for therapy discontinuation were analyzed.ResultsPatients switched to natalizumab in Russia are mainly female (63%), with median EDSS score of 3.5 and high disease activity: 93% had at least 1 relapse and 58% had both T1Gd+ and new T2 lesion a year before therapy initiation. Introduction of federal reimbursement allowed patients with less relapses to start therapy with natalizumab. The only predictor of 6-month progression was EDSS score at the baseline of therapy (HR = 2.1375, 95%CI 1.0026-4.5570, p = 0.0492). 82% patients reached NEDA-3 at 24 month of therapy. 25% of patients discontinued NTZ for reasons: tolerability (14.5%), JCV antibody status (61%), and patient's decision (17%). RMP was implemented in only 36% patients.ConclusionNatalizumab appeared to have high efficacy in Russian clinical practice. Federal reimbursement allowed less active patients to start natalizumab. More efforts should be done to improve RMP implementation