Болезнь Горхема-Стаута

1. Протоколы заседаний Объединенной комиссии по качеству медицинских услуг МЗ РК, 2018
   1. 1) Болезнь Горхама-Стаута Д-р Gulraiz CHAUDRY - Д-р Cameron TRENOR - Последнее обновление: ноябрь 2014 г. https://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=8684&Disease_Disease_Search_diseaseGroup=Stout&Disease_Disease_Search_diseaseType=Pat&Disease(s)/group of diseases=Gorham-Stout-disease&title=Gorham-Stout-disease&search=Disease_Search_Simple; 2) Первый отчет об эффективном и целесообразном лечении мультифокального лимфангиоматоза (Горхам-Стаут) с бевацизумабом у ребенка TGP Grunewald L. Damke M. Maschan U. Petrova O. Surianinova A. Esipenko D. Konovalov U. Behrends J. Schiessl K. Wörtler https://academic.oup.com/annonc/article/21/8/1733/154201; 3) Колуччи S, Taraboletti г, Primo L, и другие. Синдром Горхема-Стата: опосредуемая моноцитом цитокиновая болезнь, J Bone Miner Res, 2006, vol. 21 (Стр. 207-218); 4) Зостериформные венозные мальформации. Болезнь Горхема. Синдром Баннайана—Зонана, Райли—Смита. Источник: https://meduniver.com/Medical/Dermat/259.html MedUniver; 5) Duffy BM, Manon R, Patel RR, et al. A case of Gorham’s disease with chylothorax treated curatively withradiation therapy. Clin Med Res. 2005;3:83–86; 6) Dunbar SF, Rosenberg A, Mankin H, et al. Gorham’s massive osteolysis: the role of radiation therapy and a review of the literature. Int J Radiat Oncol Biol Phys. 1993;26:491–497; 7) Dupond JL, Bermont L, Runge M, et al. Plasma VEGF determination in disseminated lymphangiomatosis Gorham-Stout syndrome: a marker ofactivity? A case report with a 5-year follow-up. Bone.2010;46:873–876. doi: 10.1016/j.bone.2009.11.015; 8) Fontanesi J. Radiation therapy in the treatment of Gorham disease. J Pediatr Hematol Oncol. 2003;25:816–817; 9) Nir V, Guralnik L, Livnat G, et al. Propranolol as a treatment option in Gorham–Stout syndrome: a case report. Pediatr Pulmonol. 2014;49:417-419. doi:10.1002/ppul.22869; 10) Patel DV. Gorham’s disease or massive osteolysis. 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Interleukin6: a potential mediator of the massive osteolysis in patients with Gorham–Stout disease. J Clin EndocrinolMetab. 1996;81:1893–1897; 33) Fujiu K, Kanno R, Suzuki H, et al. Chylothorax associated with massive osteolysis (Gorham’s syndrome). Ann Thorac Surg. 2002;73:1956–1957; 34) Grunewald TG, Damke L, Maschan M, et al. First report of effective and feasible treatment of multifocal lymphangiomatosis (Gorham–Stout) with bevacizumab in a child. Ann Oncol. 2010;21:1733–1734. doi:10.1093/annonc/mdq331; 35) Hammer F, Kenn W, Wesselmann U, et al. Gorham-Stout disease - stabilization during bisphosphonate treatment. J Bone Miner Res. 2005;20:350–353; 36) Heyd R, Micke O, Surholt C, et al. Radiation therapy for Gorham–Stout syndrome: results of a national patterns-of-care study and literature review. Int J Radiat Oncol Biol Phys. 2011;81:e179–e185. doi: 10.1016/j.ijrobp.2011.01.006; 37) Hirayama T, Sabokbar A, Itonaga I, et al. Cellular and humoral mechanisms of osteoclast formation and bone resorption in Gorham-Stout disease. J Pathol.2001;195:624–630; 38) Hu P, Yuan XG, Hu XY, et al. Gorham-Stout syndrome in mainland China: a case series of 67 patients and review of the literature. J Zhejiang Univ-Sci B.2013;14:729–735. doi: 0.1631/jzus.B1200308; 39) Jackson JBS. A boneless arm. Boston Med Surg J.1838;18:368–369; 40) Johnson PM, McClure JG. Observations on massive osteolysis; a review of the literature and report of a case. Radiology. 1958;71:28–42; 41) Kuriyama DK, McElligott SC, Glaser DW, et al.Treatment of Gorham–Stout disease with zoledronic acid and interferon-alpha: a case report and literature review. J Pediatr Hematol Oncol. 2010;32:579–584. doi: 10.1097/MPH.0b013e3181edb464; 42) Lehmann G, Pfeil A, Bottcher J, et al. Benefit of a 17-year long-term bisphosphonate therapy in a patient with Gorham–Stout syndrome. Arch Orthop Trauma Surg. 2009;129:967–972. doi: 10.1007/s00402-008-0742-3; 43) Leite I, Hernandez-Martin A, Colmenero I,et al. Invasive lymphatic malformation (gorham–stout) of the pelvis with prominent skin involvement.Pediatr Dermatol. 2013;30:374–378. doi: 10.1111/j. 1525-1470.2012.01814.x; 44) Lohela M, Bry M, Tammela T, et al. VEGFs and receptors involved in angiogenesis versus lymphangiogenesis.Curr Opin Cell Biol. 2009;21:154–165. doi:10.1016/j.ceb.2008.12.012; 45) McNeil KD, Fong KM, Walker QJ, et al. Gorham’s syndrome: a usually fatal cause of pleural effusion treated successfully with radiotherapy. Thorax. 1996;51:1275–1276; 46) Papadakis SA, Khaldi L, Babourda EC, et al. Vanishing bone disease: review and case reports. Orthopedics. 2008;31:278; 47) Pedroletti F, Rangarajan S, McCain JP, et al.Conservative treatment of a pathologic fracture in a patientwith Gorham–Stout disease. Oral Surg Oral Med Oral Pathol Oral Radiol Endod. 2010;109:e49–e52.doi: 10.1016/j.tripleo.2009.08.045; 48) Poirier H. Massive osteolysis of the humerus treated by resection and prosthetic replacement. J Bone Joint Surg Br. 1968;50:158–160; 49) Ruggieri P, Montalti M, Angelini A, et al. Gorham–Stout disease: the experience of the Rizzoli Institute and review of the literature. Skeletal Radiol.2011;40:1391–1397. doi: 10.1007/s00256-010-1051-9; 50) Silva S. Gorham–Stout disease affecting both hands: stabilisation during biphosphonate treatment. Hand(N Y). 2011;6:85–89. doi: 10.1007/s11552-010-9292-6; 51) Simpson BS. An unusual case of post-traumatic decalcification of the bones of the foot. J Bone Joint Surg.1937;19:223–227; 52) Tauro B. Multicentric Gorham’s disease. J Bone Joint Surg Br. 1992;74:928–929. 52. Thoma KH. A case of progressive atrophy of the facial bones with complete atrophy of the mandible. J Bone Joint Surg Am. 1933;15:494–501; 53) Tie ML, Poland GA, Rosenow EC 3rd. Chylothorax in Gorham’s syndrome. A common complication of a rare disease. Chest. 1994;105:208–213; 54) Venkatramani R, Ma NS, Pitukcheewanont P,et al. Gorham’s disease and diffuse lymphangiomatosis in children and adolescents. Pediatr Blood Cancer.2011;56:667–670. doi: 10.1002/pbc.22948; 55) Pulmonary and pleural lymphatic endothelial cells from pediatric, but not adult, patients with Gorham-Stout disease and generalized lymphatic anomaly, show a high proliferation rate; 56) Mori M1, Dictor M2, Brodszki N3, López-Gutiérrez JC4, Beato M5, Erjefält JS1, Eklund EA6; 57) Gorham-Stout disease: radiological, histological, and clinical features of 12 cases and review of literature; 58) Liu Y1, Zhong DR2, Zhou PR1, Lv F1, Ma DD1, Xia WB1, Jiang Y1, Wang O1, Xing XP1, Li M3;; 59) Abdominal lymphangiomatosis in a 38-year-old female: case report and literature review; 60) Lin RY1, Zou H1, Chen TZ1, Wu W1, Wang JH1, Chen XL1, Han QX1. Medicine (Baltimore). 2018 Jul;97(29):e11555. doi: 10.1097/MD.0000000000011555. Review; 61) Successful treatment of Gorham-Stout syndrome in the spine by vertebroplasty with cement augmentation: A case report and literature review. Orphanet J Rare Dis. 2016 May 18;11(1):67. doi: 10.1186/s13023-016-0449-4; 62) Liu S1, Zhou X1, Song A2, Kong X3, Wang Y1, Liu Y1 ; 63) Pulmonary and pleural lymphatic endothelial cells from pediatric, but not adult, patients with Gorham-Stout disease and generalized lymphatic anomaly, show a high proliferation rate; 64) Mori M1, Dictor M2, Brodszki N3, López-Gutiérrez JC4, Beato M5, Erjefält JS1, Eklund EA6; 65) Gorham-Stout Disease of the Skull Base With Hearing Loss: Dramatic Recovery and Antiangiogenic Therapy. Nozawa A, Ozeki M, Kuze B, Asano T, Matsuoka K, Fukao T; 66) Pediatr Blood Cancer. 2016 May;63(5):931-4. doi: 10.1002/pbc.25886. Epub 2015 Dec 29. 67) Nozawa A1, Ozeki M1, Kuze B2, Asano T3, Matsuoka K4, Fukao T1; 68) Use of zoledronic acid combined with thalidomide in the treatment of Gorham-Stout disease. Rheumatology (Oxford). 2018 Jun 1;57(6):1122-1124. doi: 10.1093/rheumatology/key055. Review. No abstract available.Mao T1, Xu L1, Yu Y2, Li Z1, Sheng J1; 69) Two cases of Gorham-Stout disease with good response to zoledronic acid treatment. 70) Brance ML1,2,3, Castiglioni A4, Cóccaro N4, Palatnik M1.Send to Clin Cases Miner Bone Metab. 2017 May-Aug;14(2):250-253. doi: 10.11138/ccmbm/2017.14.2.250. Epub 2017 Oct 25; 71) Gorham-Stout Disease Successfully Treated With Sirolimus and Zoledronic Acid Therapy.Cramer SL, Wei S, Merrow AC, Pressey JG; 72) J Pediatr Hematol Oncol. 2016 Apr;38(3):e129-32. doi: 10.1097/MPH.0000000000000514; 73) Gorham-Stout disease of the proximal fibula treated with radiotherapy and zoledronic acid; 74) Yerganyan VV, Body JJ, De Saint Aubain N, Gebhart M; 75) J Bone Oncol. 2015 May 16;4(2):42-6. doi: 10.1016/j.jbo.2015.05.001. eCollection 2015 Jun. 76) Gorham-Stout syndrome of the pelvic girdle treated by radiation therapy: a case report; 77) Heyd R, Rabeneck D, Dörnenburg O, Tselis N, Zamboglou N; 78) Strahlenther Onkol. 2011 Feb;187(2):140-3. doi: 10.1007/s00066-010-2174-6. Epub 2011 Jan 18; 79) Treatment of Gorham-Stout disease with zoledronic acid and interferon-α: a case report and literature review; 80) Kuriyama DK, McElligott SC, Glaser DW, Thompson KS; 81) J Pediatr Hematol Oncol. 2010 Nov;32(8):579-84. doi: 10.1097/MPH.0b013e3181edb464. Review; 82) Sirolimus Therapy as Perioperative Treatment of Gorham-Stout Disease in the Thoracic Spine: A Case Report; 83) Mo AZ, Trenor CC 3rd, Hedequist DJ; 84) JBJS Case Connect. 2018 Jul-Sep;8(3):e70. doi: 10.2106/JBJS.CC.17.00287; 85) 68.Sirolimus on Gorham-Stout disease. Case report; 86) García V, Alonso-Claudio G, Gómez-Hernández MT, Chamorro AJ; 87) Colomb Med (Cali). 2016 Dec 30;47(4):213-216; 88) Sirolimus in the Treatment of Vascular Anomalies; 89) Triana P, Dore M, Cerezo VN, Cervantes M, Sánchez AV, Ferrero MM, González MD, Lopez-Gutierrez JC; 90) Eur J Pediatr Surg. 2017 Feb;27(1):86-90. doi: 10.1055/s-0036-1593383. Epub 2016 Oct 10; 91) 70.Gorham-Stout Disease of the Skull Base With Hearing Loss: Dramatic Recovery and Antiangiogenic Therapy; 92) Nozawa A, Ozeki M, Kuze B, Asano T, Matsuoka K, Fukao T; 93) Pediatr Blood Cancer. 2016 May;63(5):931-4. doi: 10.1002/pbc.25886. Epub 2015 Dec 29; 94) Complex lymphatic anomalies; 95) Trenor CC 3rd, Chaudry G.; 96) Semin Pediatr Surg. 2014 Aug;23(4):186-90. doi: 10.1053/j.sempedsurg.2014.07.006. Epub 2014 Jul 22. Review; 97) Sirolimus for the treatment of complicated vascular anomalies in children†; 98) Authors Adrienne M. Hammill MD, PhD,MarySue Wentzel RN,ita Gupta MD,tephen NelsonD,Anne Lucky MD,Ravi Elluru MD, PhD,Roshni Dasgupta MD,Richard G. Azizkhan MD,Denise M. Adams MDFirst published: 28 March 2011Full publication history DOI: 10.1002/pbc.23124 View/save citation.

ОРГАНИЗАЦИОННЫЕ АСПЕКТЫ ПРОТОКОЛА

Список разработчиков протокола с указание квалификационных данных:

1) Колеснев Александр Валерьевич – заведующий отделением онкогематологической реанимации «Национального научного центра онкологии и трансплантологии» корпоративного фонда «University Medical Center»;

2) Муканова Шолпан Насыровна - начальник отдела разработки и внедрения клинических стандартов Департамента стандартизации корпоративного фонда «University Medical Center»;

3) Жадыгеров Дан Булатович - МВА, заведующий отделением ортопедии «Национального научного центра онкологии и трансплантологии» корпоративного фонда «University Medical Center»;

4) Абдалиев Сейдали Сапаралиевич - заведующий отделением ортопедии №6 «Научно-исследовательского института травматологии и ортопедии», травматолог-ортопед высшей категории.

5) Макалкина Лариса Геннадьевна – кандидат медицинских наук, PhD, заведующая курсом клинической фармакологии и фармации кафедры кардиологии и внутренних болезней АО «Медицинский университет Астана».

Указание на отсутствие конфликта интересов:

Рецензенты:
Сагандыков Ирлан Негметжанович – кандидат медицинских наук, заведующий отделением сосудистой хирургии «Национального научного центра онкологии и трансплантологии» корпоративного фонда «University Medical Center».
 
Указание условий пересмотра протокола: пересмотр протокола через 5 лет после его опубликования и с даты его вступления в действие или при наличии новых методов с уровнем доказательности.