ppharmПедиатрическая фармакологияPediatric pharmacology1727-57762500-3089Издательство «ПедиатрЪ»10.15690/pf.v20i2.2558ppharm-2296Research ArticleИНФОРМАЦИЯ СОЮЗА ПЕДИАТРОВ РОССИИFROM THE UNION OF PEDIATRICIANS OF RUSSIAРезолюция Консультационного совета по критериям назначения патогенетической терапии гипофосфатазии у пациентов в детском возрастеResolution of the Advisory Council on the criteria for the appointment of pathogenetic therapy of hypophosphatasia in childrenРедакционнаястатьяEditorialArticle202303052023202206208Copyright © Редакционная с., 20232023Редакционная с.Editorial a.Данная работа распространяется под лицензией Creative Commons Attribution 4.0.This work is licensed under a Creative Commons Attribution 4.0 License.https://www.pedpharma.ru/jour/article/view/2296

В рамках XII Евразийского форума по редким болезням ХХIV Конгресса педиатров России состоялся Консультационный совет экспертов, посвященный гипофосфатазии, в ходе которого ведущие специалисты обсудили текущие достижения и ответили на ряд нерешенных вопросов патогенетической терапии этого заболевания с целью дальнейшего улучшения результатов его лечения в России.

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ReferencesLiu M, Liu M, Liang, X, et al. Clinical and genetic characteristics of hypophosphatasia in Chinese children. Orphanet J Rare Dis. 2021;16(1):159. doi: https://doi.org/10.1186/s13023-021-01798-1Liu M, Liu M, Liang, X, et al. Clinical and genetic characteristics of hypophosphatasia in Chinese children. Orphanet J Rare Dis. 2021;16(1):159. doi: https://doi.org/10.1186/s13023-021-01798-1Michigami T, Tachikawa K, Yamazaki M, et al. Hypophosphatasia in Japan: ALPL mutation analysis in 98 unrelated patients. Calcif Tissue Int. 2020;106(3):221–231. doi: https://doi.org/10.1007/s00223-019-00626-wMichigami T, Tachikawa K, Yamazaki M, et al. Hypophosphatasia in Japan: ALPL mutation analysis in 98 unrelated patients. Calcif Tissue Int. 2020;106(3):221–231. doi: https://doi.org/10.1007/s00223-019-00626-wMornet E. Hypophosphatasia. Metabolism. 2018;82:142–155. doi: https://doi.org/10.1016/j.metabol.2017.08.013Mornet E. Hypophosphatasia. Metabolism. 2018;82:142–155. doi: https://doi.org/10.1016/j.metabol.2017.08.013Mornet E, Yvard A, Taillandier A, et al. A molecular-based estimation of the prevalence of hypophosphatasia in the European population. Ann Hum Genet. 2011;75(3):439–445. doi: https://doi.org/10.1111/j.1469-1809.2011.00642.xMornet E, Yvard A, Taillandier A, et al. A molecular-based estimation of the prevalence of hypophosphatasia in the European population. Ann Hum Genet. 2011;75(3):439–445. doi: https://doi.org/10.1111/j.1469-1809.2011.00642.xScott LJ. Asfotase alfa: a review in pediatric-onset hypophosphatasia. Drugs. 2016;76(2):255–262. doi: https://doi.org/10.1007/s40265-015-0535-2Scott LJ. Asfotase alfa: a review in pediatric-onset hypophosphatasia. Drugs. 2016;76(2):255–262. doi: https://doi.org/10.1007/s40265-015-0535-2Rush ET, Moseley S, Petryk A. Burden of disease in pediatric patients with hypophosphatasia: results from the HPP Impact Patient Survey and the HPP Outcomes Study Telephone interview. Orphanet J Rare Dis. 2019;14(1):201. doi: https://doi.org/10.1186/s13023-019-1167-5Rush ET, Moseley S, Petryk A. Burden of disease in pediatric patients with hypophosphatasia: results from the HPP Impact Patient Survey and the HPP Outcomes Study Telephone interview. Orphanet J Rare Dis. 2019;14(1):201. doi: https://doi.org/10.1186/s13023-019-1167-5Калинченко Н.Ю., Голоунина О.О., Гребенникова Т.А. и др. Опыт клинического применения асфотазы альфа у молодого пациента с детской формой гипофосфатазии // Остеопороз и остеопатии. — 2019. — Т. 22. — № 1.— С. 24–29. — doi: https://doi.org/10.14341/osteo10136Kalinchenko NY, Golounina OO, Grebennikova TA, et al. Clinical application experience of asfotase alfa for a young patient with childhood hypophosphatasia. Osteoporosis and Bone Diseases. 2019;22(1):24–29. (In Russ). doi: https://doi.org/10.14341/osteo10136]Jandl NM, Schmidt T, Rolvien T, et al. Genotype-Phenotype Associations in 72 Adults with Suspected ALPL-Associated Hypophosphatasia. Calcif Tissue Int. 2021;108(3):288–301. doi: https://doi.org/10.1007/s00223-020-00771-7Jandl NM, Schmidt T, Rolvien T, et al. Genotype-Phenotype Associations in 72 Adults with Suspected ALPL-Associated Hypophosphatasia. Calcif Tissue Int. 2021;108(3):288–301. doi: https://doi.org/10.1007/s00223-020-00771-7Colantonio DA, Kyriakopoulou L, Chan MK, et al. Closing the gaps in pediatric laboratory reference intervals: a CALIPER database of 40 biochemical markers in a healthy and multiethnic population of children. Clin Chem. 2012;58(5):854–868. doi: https://doi.org/10.1373/clinchem.2011.177741Colantonio DA, Kyriakopoulou L, Chan MK, et al. Closing the gaps in pediatric laboratory reference intervals: a CALIPER database of 40 biochemical markers in a healthy and multiethnic population of children. Clin Chem. 2012;58(5):854–868. doi: https://doi.org/10.1373/clinchem.2011.177741Вислобокова Е.В. Стоматологические проявления гипофосфатазии у детей // Российский вестник перинатологии и педиатрии. — 2018. — Т. 63. — № 4. — С. 291. — doi: https://doi.org/10.21508/1027-4065-congress-2018Vislobokova EV. Stomatologicheskie proyavleniya gipofosfatazii u detei. Rossiyskiy Vestnik Perinatologii i Pediatrii = Russian Bulletin of Perinatology and Pediatrics. 2018;63(4):291. (In Russ). doi: https://doi.org/10.21508/1027-4065-congress-2018]ATS Statement: Guidelines for the Six-Minute Walk Test. Am J Respir Crit Care Med. 20021;166(1):111–117. doi: https://doi.org/10.1164/ajrccm.166.1.at1102ATS Statement: Guidelines for the Six-Minute Walk Test. Am J Respir Crit Care Med. 20021;166(1):111–117. doi: https://doi.org/10.1164/ajrccm.166.1.at1102Hawker GA, Mian S, Kendzerska T, French M. Measures of adult pain: Visual Analog Scale for Pain (VAS Pain), Numeric Rating Scale for Pain (NRS Pain), McGill Pain Questionnaire (MPQ), Short-Form McGill Pain Questionnaire (SF-MPQ), Chronic Pain Grade Scale (CPGS), Short Form-36 Bodily Pain Scale (SF-36 BPS), and Measure of Intermittent and Constant Osteoarthritis Pain (ICOAP). Arthritis Care Res (Hoboken). 2011;63 Suppl 11:240–252. doi: https://doi.org/10.1002/acr.20543Hawker GA, Mian S, Kendzerska T, French M. Measures of adult pain: Visual Analog Scale for Pain (VAS Pain), Numeric Rating Scale for Pain (NRS Pain), McGill Pain Questionnaire (MPQ), Short-Form McGill Pain Questionnaire (SF-MPQ), Chronic Pain Grade Scale (CPGS), Short Form-36 Bodily Pain Scale (SF-36 BPS), and Measure of Intermittent and Constant Osteoarthritis Pain (ICOAP). Arthritis Care Res (Hoboken). 2011;63 Suppl 11:240–252. doi: https://doi.org/10.1002/acr.20543Ravaud JF, Delcey M, Yelnik A. Construct validity of the functional independence measure (FIM): Questioning the unidimensionality of the scale and the “value” of FIM scores. Scand J Rehabil Med. 1999;31(1):31–41. doi: https://doi.org/10.1080/003655099444704Ravaud JF, Delcey M, Yelnik A. Construct validity of the functional independence measure (FIM): Questioning the unidimensionality of the scale and the “value” of FIM scores. Scand J Rehabil Med. 1999;31(1):31–41. doi: https://doi.org/10.1080/003655099444704Borg GA. Psychophysical bases of perceived exertion. Med Sci Sports Exerc. 1982;14(5):377–381.Borg GA. Psychophysical bases of perceived exertion. Med Sci Sports Exerc. 1982;14(5):377–381.Borg G. Borg’s Perceived Exertion and pain Scales. Human Kinetics; 1998. p. 2.Borg G. Borg’s Perceived Exertion and pain Scales. Human Kinetics; 1998. p. 2.Grant S, Aitchison T, Henderson E, et al. A comparison of the reproducibility and the sensitivity to change of visual analogue scales, Borg scales, and Likert scales in normal subjects during submaximal exercise. Chest. 1999;116(5):1208–1217. doi: https://doi.org/10.1378/chest.116.5.1208Grant S, Aitchison T, Henderson E, et al. A comparison of the reproducibility and the sensitivity to change of visual analogue scales, Borg scales, and Likert scales in normal subjects during submaximal exercise. Chest. 1999;116(5):1208–1217. doi: https://doi.org/10.1378/chest.116.5.1208Deitz JC, Kartin D, Kopp K. Review of the Bruininks-Oseretsky Test of Motor Proficiency, Second Edition (BOT-2). Phys Occup Ther Pediatr. 2007;27(4):87–102.Deitz JC, Kartin D, Kopp K. Review of the Bruininks-Oseretsky Test of Motor Proficiency, Second Edition (BOT-2). Phys Occup Ther Pediatr. 2007;27(4):87–102.

The authors declare that there are no conflicts of interest present.