血友病防治的進(jìn)展課件

血友病防治的進(jìn)展中國(guó)醫(yī)學(xué)科學(xué)院中國(guó)協(xié)和醫(yī)科大學(xué)血液學(xué)研究所血液病醫(yī)院楊仁池血友病防治的進(jìn)展中國(guó)醫(yī)學(xué)科學(xué)院中國(guó)協(xié)和醫(yī)科大學(xué)血液學(xué)研究所血概況血友病是一種遺傳性出血性疾病，呈X連鎖隱性遺傳。本病是由于凝血因子VIII和IX基因突變使FVIII和FIX質(zhì)或量的異常所致。血友病甲在男性人群中的患病率約為1/5000，占血友病總數(shù)的80%以上；血友病乙在男性人群中的患病率約為1/30000，占血友病總數(shù)的10%20%。

目前，本病在發(fā)展中國(guó)家（如我國(guó)）的致殘率和病死率遠(yuǎn)高于發(fā)達(dá)國(guó)家。替代治療是唯一有效的治療措施。因此，這類患者也是發(fā)生肝炎和愛(ài)滋病的高危人群。概況血友病是一種遺傳性出血性疾病，呈X連鎖隱性遺傳。本病是由

血友病的嚴(yán)重程度與出血

血友病甲和乙的分型

重型 中間型 輕型因子水平<1% 因子水平1%-5% 因子水平>5%特征是自發(fā)出血 輕微損傷出血 嚴(yán)重?fù)p傷、外科手術(shù) 和侵入性檢查時(shí)出血每周可出血1-2次 每月可出血1次 可以從不出血關(guān)節(jié)受累為特征 可有關(guān)節(jié)受累 關(guān)節(jié)受累罕見(jiàn)(關(guān)節(jié)血腫)血友病的嚴(yán)重程度與出血血國(guó)內(nèi)現(xiàn)狀無(wú)足夠的凝血因子制劑凝血因子制劑費(fèi)用太高大多數(shù)血友病病人無(wú)醫(yī)療保險(xiǎn)無(wú)全國(guó)性的血友病防治系統(tǒng)病人組織未獲官方認(rèn)可醫(yī)護(hù)人員對(duì)本病認(rèn)識(shí)不夠病人及其家庭成員對(duì)本病認(rèn)識(shí)不夠多數(shù)醫(yī)院不能對(duì)本病進(jìn)行診斷（因?yàn)閷?shí)驗(yàn)條件不具備）國(guó)內(nèi)現(xiàn)狀無(wú)足夠的凝血因子制劑WFHGlobalSurvey2001/2Country Pop.DiagnosedNo.HTCPercapita(106)(%)FVIIIuse Australia1995153.0USA278871403.4Germany828265.5Iran6382100.5Russia1468140.1Egypt637570.1SouthAfrica4252100.6India99812560.01China12275WFHGlobalSurvey2001/2CountrWFHGlobalSurvey2004Australia:Hemophilia1070,vWD804USA:Hemophilia14886,vWD9801UK:Hemophilia6109,vWD5582Germany:Hemophilia4800,vWD3100Italy:Hemophilia5319,vWD2275Russia:Hemophilia7875,vWD3380Thailand:Hemophilia1325,vWD69Turkey:Hemophilia1929,vWD100SouthAfrica:Hemophilia1579,vWD463China:Hemophilia4131,vWD227WFHGlobalSurvey2004AustraliWFHGlobalSurvey2004調(diào)查的國(guó)家：96個(gè)覆蓋的世界人口：85%血友?。?20812例；vWD：43334例國(guó)家數(shù)據(jù)庫(kù)：40個(gè)WFHGlobalSurvey2004調(diào)查的國(guó)家：96血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件CurrentDataTianjinHemophiliaCenter:1627AnhuiHemophiliaCenter:717ShandongHemophiliaCenter:669JiangsuHematologyInstitute:389RuijinHospital:341FirstaffiliatedhospitalofSunYet-sanUniversity:250NanfangHospital:169Guangdongpeople’shospital:165PekingUnionCollegeHospital:79Thethirdpeople’shospitalofWenzhou:60BeijingPeople’sHospital:55Beijingchildrenhospital:47FirstaffiliatedhospitalofZhejiangUniversity:9Total:4577CurrentDataTianjinHemophiliaHemophiliaandrelateddisordersinTianjinHemophiliaCenter(1980-2002.6)Total:1312HemophiliaA:988(75.3%)HemophiliaB:186(14.2%)vWD：85(6.5%)FXIdeficiency：23(1.8%)AcquiredFVIIIdeficiency：15(1.1%)Others：15(1.1%)HemophiliaandrelateddisordeArthropathyindifferentages0-10:48/386(12.4%)(15.2%)10-20:76/251(30.3%)(35.0%)20-30:73/141(51.8%)(55.7%)>30:74/143(51.7%)(72.3%)Arthropathyindifferentages0血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件AIDSinrecipientofcoagulationfactorconcentrates(1978-85)60-70%patientsbecameinfectedwithHIVThousandsofthemhavediedofAIDSHIVinfectionincreasestheriskofliverfailureafterinfectionwithHCV21-fold(Estimatedriskofliverfailure20yearsafterinfectionwithHCVis10%)AIDSinrecipientofcoagulati血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病的基因治療世界上首例血友病基因治療臨床試驗(yàn)由薛京倫教授及其研究組完成FVIII或FIX基因缺陷小鼠的實(shí)驗(yàn)FVIII或FIX基因缺陷犬的實(shí)驗(yàn)現(xiàn)階段的臨床試驗(yàn)：載體-AAV、腺病毒、逆轉(zhuǎn)錄病毒等途徑-肌肉注射、肝靜脈等血友病的基因治療世界上首例血友病基因治療臨床試驗(yàn)由薛京倫教授

血友病出血的治療原則

早期治療

-2小時(shí)以內(nèi),如有可能進(jìn)行“家庭”治療

“懷疑時(shí)治療”

靜脈穿刺時(shí)倍加小心

-合適的針頭

(21-25G) -恰當(dāng)?shù)募夹g(shù)

-穿刺后加壓

10-15分鐘

避免導(dǎo)致血小板功能異常的藥物

(阿斯匹林

/NSAID)

多學(xué)科方法

–“綜合護(hù)理”血友血友病的出血部位

關(guān)節(jié)

肌肉

/軟組織

口腔

鼻衄

血尿

胃腸道

擦傷/撕裂傷

中樞神經(jīng)系統(tǒng)出血

損傷相關(guān)

–任何部位血友病的出血部位 關(guān)節(jié)替代治療指南出血類型 FVIII劑量（U/kg） FIX劑量（U/kg） 因子水平(%)急性關(guān)節(jié)出血 10-20，q.12h 15,q.24 30-50肌肉內(nèi) 20-30,q12h 40-60,q.24h 40-50CNS 50,q12h,或連續(xù)輸注 100，然后50,q24h 開(kāi)始100，然后 50-100，10-14d損傷或外科 50,q12h,或連續(xù)輸注 100,q24h 100,然后50,

至傷口開(kāi)始愈合， 然后30至痊愈咽后壁 50,q12h,4d 40,q24h,4d 50-70胃腸道 50,q12h,3d, 40,q24h,3d 50-100

或直至出血減輕 或直至出血減輕血尿 40，3-5d 40,3d 50拔牙 20,一次，EACA 40,一次，EACA 50 100mg/kg,7-10d 100mg/kg,7-10d腹膜后 50,q12h,6d 100,q24h,6d 開(kāi)始100，然后 50，直至痊愈替代治療指南China

APrioritizedProject,WFH1993–1997:EducationandTraining1997–2001/02:HemophiliaTwinningCentresandTreatmentCentreDevelopment2002–2004:ACountryProgramwithaHemophiliaTreatmentCentreNetwork,ChinaChina

APrioritizedProject,China

APrioritizedProject,WFHIn1993,WFHlaunchedapriorityprojecttopromoteandimproveHemophiliaCareinChina.Objectives:EducationTrainingAwarenessCareimprovementsOverthepast10yearssignificantprogresshasbeenAchievedthroughthreephasesofplanning.China

APrioritizedProject,1993–1997:

EducationandTrainingMajoractivitiesfocusedonHemophiliaconferencesforeducatingprofessionals,patients,familiesandhospitalstaff.Training,education,awarenessandparticipationbypatientgroupsincreased.WFHfellowshipswereawardedtophysicians,nurses,technologistsandsurgeons.Thisresultedinincreasedprofessionalswithexpertiseintheclinics.1993–1997:

EducationandTr1997–2001/02:

HemophiliaTwinningCentresand

TreatmentCentreDevelopmentUndertheWFHHemophiliaTwinningCentreprogram,4centreswereestablishedinChina.1997 HematologyInstitute,Tianjin/Calgary,Canada2000 NanfangHospital,Guangzhou/Ottawa,Canada2000HongKong/London,UK2001 RuijinHospital,Shanghai/CalgaryandOttawa HemophiliaTreatmentCentresweredevelopedinJinanandHefei.1997–2001/02:

HemophiliaTwPatientGroupActivities/LeadershipFivepatientleadersfromfourcitieswereidentifiedandreceivedleadershiptraininginMontreal(2000),Seville(2002)andBangkok(2004).ThisgroupestablishedtheHemophiliaHomeofChinadevelopingawebsite.Theyhavebeenveryactiveintheircommunitiespromotingpatientcareandparticipation.ManypatienteducationmaterialshavebeentranslatedintoChinesebythisgroup.PatientGroupActivities/LeaVisionforaNationalStrategy2001-2004Asthesecentresmatured,sharingofexpertiseandresourcesstrengthened.Throughthiscollaboration,thevalueofaNationalBodytocoordinatedevelopmentofHemophiliaCareinthecountrywasrealized.VisionforaNationalStrategyAttheRegionalHemophiliaCareConference,Guangzhou,Nov2001,theprofessionalgroupsagreedon:(1)Threepriorityprojectsforurgentdevelopment:

(i)ANationalRegistry (ii)HemophiliaNursing (iii)Coagulationtestingworkshops.(2)AstrategytoformulateaNationalBody,later formalizedasthe“HemophiliaTreatmentCentreCollaborativeNetwork,China”.AttheRegionalHemophiliaCarProjectProgressNationalRegistry

–Projectchair:Dr.RenchiYang,Tianjin.Established2002.Currentregistrants=4132patients(approx.%5ofestimatedPWHinChina).PosterpresentationinBangkok.HemophiliaNursing

–ProjectChair:Dr.JingSun,Nanfang.TwoHemophiliaNursingconferencesNovember2003,October2004.PosterpresentationinBangkok.CoagulationTestingWorkshop

–ProjectChair:Dr.XuefengWang,Shanghai,April2005ProjectProgressNationalRegis2002–2004:

ACountryProgramwitha

HemophiliaTreatmentCentreNetwork,ChinaBetween2002–2003Dr.MCPoonand Dr.KHLukevisitedcentresinBeijing,Tianjin,Jinan,Shanghai,HefeiandGuangzhouandreceivedunanimoussupportforaNationalNetwork.AproposalforaCountryProgramforChinawassupportedbyWFH.AWFHHemophiliaConferencewasheldtoestablishthenetworkin2004inShangdongBloodCenter,Jinan,Shangdong.2002–2004:

ACountryPrograWFHHemophiliaConference

March2004,Jinan,China

AtthisconferencetheHemophiliaTreatmentCentreCollaborativeNetworkChinawasformalized.Thesixfoundingmembersare:1.

HemophiliaCentre,InstitutionofHematology,Tianjin2.

HemophiliaCentre,NanfangHospital,Guangzhou3.

HemophiliaCentre,RuijinHospital,Shanghai4.

HemophiliaCentre,PekingUnionMedicalCollegeHospital,Beijing5.

HemophiliaCentre,AnhuiProvincialHospital,Hefei6.

HemophiliaClinic,ShandongBloodCentre,JinanAgreatachievementwasthevastrepresentationof150professionalsfrom25cities/provinces.WFHHemophiliaConference

MANETWORKOFHEMOPHILIATREATMENTCENTRESHASBEENESTABLISHEDASASOLIDFOUNDATIONTOPROMOTEHEMOPHILIA CAREINCHINAFORTHEFUTURE.ANETWORKOFHEMOPHILIATREATChallengesAheadMAJORTARGETS1.ProvideaccessiblecaretomorepatientswithHemophiliaOutreachprogramsEducationWorkshopsHemophiliaNursingPatientgroupleaders/activities

2.ProvideaffordablecaretomorepatientwithHemophiliaAlong-termgoal–tolobbyMOHtosupportaffordabletreatmentproductsforpatientsShort-termgoals–providingtreatmentforpatientswithprioritizedneedsChallengesAheadMAJORTARGETS現(xiàn)狀全國(guó)血友病協(xié)作組成立于1985年，2000年重組中國(guó)于1990年成為世界血友病聯(lián)盟（WFH）的國(guó)家成員單位（由中國(guó)醫(yī)學(xué)科學(xué)院血液學(xué)研究所代表）WFH于1993年在天津舉行了國(guó)際血友病培訓(xùn)中心講習(xí)班姐妹中心：1997年，天津-加拿大Calgary，獲WFH的1999年度姐妹中心獎(jiǎng)；2000年，廣州-渥太華；香港-倫敦；2002年，上海-Calgary與渥太華人員培訓(xùn)：已有16人獲WFH資助，多數(shù)已在國(guó)外完成培訓(xùn)現(xiàn)狀全國(guó)血友病協(xié)作組成立于1985年，2000年重組PublicationLuL,etal.Haemophilia2004,10(5):661-664WangT,etal.Haemophilia2004;10(4):370-375ZhangL,etal.Haemophilia2003,9(5):696-702ZhangL,etal.ChinMedJ.2004;117(6):953-5YangR,etal.Haemophilia1999,5(6):453-456JiL,etal.Haemophilia1998,4(5):721-724PublicationLuL,etal.HaemopAcknowledgementMembersoftheNationalHemophiliaRegistryGroupofChina:Dr.PeifangDing,Dr.JingSun,Dr.XuefengWang,Dr.JingshengWu,Dr.RenchiYangandDr.YongqiangZhaoConsultants:Prof.Man-ChiuPoon,Calgary,CANADA,andDr.K.H.Luke,Ottawa,CANADAProf.ChanggengRuan,Prof.HongliWang,Prof.ChunguangWen,Prof.ShuyanZengandDr.RunhuiWuHemophiliaPatientsUnionofChinaAcknowledgementMembersofthe血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件

其實(shí)，世上最溫暖的語(yǔ)言，“不是我愛(ài)你，而是在一起?！?/p>

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血友病防治的進(jìn)展中國(guó)醫(yī)學(xué)科學(xué)院中國(guó)協(xié)和醫(yī)科大學(xué)血液學(xué)研究所血液病醫(yī)院楊仁池血友病防治的進(jìn)展中國(guó)醫(yī)學(xué)科學(xué)院中國(guó)協(xié)和醫(yī)科大學(xué)血液學(xué)研究所血概況血友病是一種遺傳性出血性疾病，呈X連鎖隱性遺傳。本病是由于凝血因子VIII和IX基因突變使FVIII和FIX質(zhì)或量的異常所致。血友病甲在男性人群中的患病率約為1/5000，占血友病總數(shù)的80%以上；血友病乙在男性人群中的患病率約為1/30000，占血友病總數(shù)的10%20%。

目前，本病在發(fā)展中國(guó)家（如我國(guó)）的致殘率和病死率遠(yuǎn)高于發(fā)達(dá)國(guó)家。替代治療是唯一有效的治療措施。因此，這類患者也是發(fā)生肝炎和愛(ài)滋病的高危人群。概況血友病是一種遺傳性出血性疾病，呈X連鎖隱性遺傳。本病是由

血友病的嚴(yán)重程度與出血

血友病甲和乙的分型

重型 中間型 輕型因子水平<1% 因子水平1%-5% 因子水平>5%特征是自發(fā)出血 輕微損傷出血 嚴(yán)重?fù)p傷、外科手術(shù) 和侵入性檢查時(shí)出血每周可出血1-2次 每月可出血1次 可以從不出血關(guān)節(jié)受累為特征 可有關(guān)節(jié)受累 關(guān)節(jié)受累罕見(jiàn)(關(guān)節(jié)血腫)血友病的嚴(yán)重程度與出血血國(guó)內(nèi)現(xiàn)狀無(wú)足夠的凝血因子制劑凝血因子制劑費(fèi)用太高大多數(shù)血友病病人無(wú)醫(yī)療保險(xiǎn)無(wú)全國(guó)性的血友病防治系統(tǒng)病人組織未獲官方認(rèn)可醫(yī)護(hù)人員對(duì)本病認(rèn)識(shí)不夠病人及其家庭成員對(duì)本病認(rèn)識(shí)不夠多數(shù)醫(yī)院不能對(duì)本病進(jìn)行診斷（因?yàn)閷?shí)驗(yàn)條件不具備）國(guó)內(nèi)現(xiàn)狀無(wú)足夠的凝血因子制劑WFHGlobalSurvey2001/2Country Pop.DiagnosedNo.HTCPercapita(106)(%)FVIIIuse Australia1995153.0USA278871403.4Germany828265.5Iran6382100.5Russia1468140.1Egypt637570.1SouthAfrica4252100.6India99812560.01China12275WFHGlobalSurvey2001/2CountrWFHGlobalSurvey2004Australia:Hemophilia1070,vWD804USA:Hemophilia14886,vWD9801UK:Hemophilia6109,vWD5582Germany:Hemophilia4800,vWD3100Italy:Hemophilia5319,vWD2275Russia:Hemophilia7875,vWD3380Thailand:Hemophilia1325,vWD69Turkey:Hemophilia1929,vWD100SouthAfrica:Hemophilia1579,vWD463China:Hemophilia4131,vWD227WFHGlobalSurvey2004AustraliWFHGlobalSurvey2004調(diào)查的國(guó)家：96個(gè)覆蓋的世界人口：85%血友?。?20812例；vWD：43334例國(guó)家數(shù)據(jù)庫(kù)：40個(gè)WFHGlobalSurvey2004調(diào)查的國(guó)家：96血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件CurrentDataTianjinHemophiliaCenter:1627AnhuiHemophiliaCenter:717ShandongHemophiliaCenter:669JiangsuHematologyInstitute:389RuijinHospital:341FirstaffiliatedhospitalofSunYet-sanUniversity:250NanfangHospital:169Guangdongpeople’shospital:165PekingUnionCollegeHospital:79Thethirdpeople’shospitalofWenzhou:60BeijingPeople’sHospital:55Beijingchildrenhospital:47FirstaffiliatedhospitalofZhejiangUniversity:9Total:4577CurrentDataTianjinHemophiliaHemophiliaandrelateddisordersinTianjinHemophiliaCenter(1980-2002.6)Total:1312HemophiliaA:988(75.3%)HemophiliaB:186(14.2%)vWD：85(6.5%)FXIdeficiency：23(1.8%)AcquiredFVIIIdeficiency：15(1.1%)Others：15(1.1%)HemophiliaandrelateddisordeArthropathyindifferentages0-10:48/386(12.4%)(15.2%)10-20:76/251(30.3%)(35.0%)20-30:73/141(51.8%)(55.7%)>30:74/143(51.7%)(72.3%)Arthropathyindifferentages0血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件AIDSinrecipientofcoagulationfactorconcentrates(1978-85)60-70%patientsbecameinfectedwithHIVThousandsofthemhavediedofAIDSHIVinfectionincreasestheriskofliverfailureafterinfectionwithHCV21-fold(Estimatedriskofliverfailure20yearsafterinfectionwithHCVis10%)AIDSinrecipientofcoagulati血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病防治的進(jìn)展課件血友病的基因治療世界上首例血友病基因治療臨床試驗(yàn)由薛京倫教授及其研究組完成FVIII或FIX基因缺陷小鼠的實(shí)驗(yàn)FVIII或FIX基因缺陷犬的實(shí)驗(yàn)現(xiàn)階段的臨床試驗(yàn)：載體-AAV、腺病毒、逆轉(zhuǎn)錄病毒等途徑-肌肉注射、肝靜脈等血友病的基因治療世界上首例血友病基因治療臨床試驗(yàn)由薛京倫教授

血友病出血的治療原則

早期治療

-2小時(shí)以內(nèi),如有可能進(jìn)行“家庭”治療

“懷疑時(shí)治療”

靜脈穿刺時(shí)倍加小心

-合適的針頭

(21-25G) -恰當(dāng)?shù)募夹g(shù)

-穿刺后加壓

10-15分鐘

避免導(dǎo)致血小板功能異常的藥物

(阿斯匹林

/NSAID)

多學(xué)科方法

–“綜合護(hù)理”血友血友病的出血部位

關(guān)節(jié)

肌肉

/軟組織

口腔

鼻衄

血尿

胃腸道

擦傷/撕裂傷

中樞神經(jīng)系統(tǒng)出血

損傷相關(guān)

–任何部位血友病的出血部位 關(guān)節(jié)替代治療指南出血類型 FVIII劑量（U/kg） FIX劑量（U/kg） 因子水平(%)急性關(guān)節(jié)出血 10-20，q.12h 15,q.24 30-50肌肉內(nèi) 20-30,q12h 40-60,q.24h 40-50CNS 50,q12h,或連續(xù)輸注 100，然后50,q24h 開(kāi)始100，然后 50-100，10-14d損傷或外科 50,q12h,或連續(xù)輸注 100,q24h 100,然后50,

至傷口開(kāi)始愈合， 然后30至痊愈咽后壁 50,q12h,4d 40,q24h,4d 50-70胃腸道 50,q12h,3d, 40,q24h,3d 50-100

或直至出血減輕 或直至出血減輕血尿 40，3-5d 40,3d 50拔牙 20,一次，EACA 40,一次，EACA 50 100mg/kg,7-10d 100mg/kg,7-10d腹膜后 50,q12h,6d 100,q24h,6d 開(kāi)始100，然后 50，直至痊愈替代治療指南China

APrioritizedProject,WFH1993–1997:EducationandTraining1997–2001/02:HemophiliaTwinningCentresandTreatmentCentreDevelopment2002–2004:ACountryProgramwithaHemophiliaTreatmentCentreNetwork,ChinaChina

APrioritizedProject,China

APrioritizedProject,WFHIn1993,WFHlaunchedapriorityprojecttopromoteandimproveHemophiliaCareinChina.Objectives:EducationTrainingAwarenessCareimprovementsOverthepast10yearssignificantprogresshasbeenAchievedthroughthreephasesofplanning.China

APrioritizedProject,1993–1997:

EducationandTrainingMajoractivitiesfocusedonHemophiliaconferencesforeducatingprofessionals,patients,familiesandhospitalstaff.Training,education,awarenessandparticipationbypatientgroupsincreased.WFHfellowshipswereawardedtophysicians,nurses,technologistsandsurgeons.Thisresultedinincreasedprofessionalswithexpertiseintheclinics.1993–1997:

EducationandTr1997–2001/02:

HemophiliaTwinningCentresand

TreatmentCentreDevelopmentUndertheWFHHemophiliaTwinningCentreprogram,4centreswereestablishedinChina.1997 HematologyInstitute,Tianjin/Calgary,Canada2000 NanfangHospital,Guangzhou/Ottawa,Canada2000HongKong/London,UK2001 RuijinHospital,Shanghai/CalgaryandOttawa HemophiliaTreatmentCentresweredevelopedinJinanandHefei.1997–2001/02:

HemophiliaTwPatientGroupActivities/LeadershipFivepatientleadersfromfourcitieswereidentifiedandreceivedleadershiptraininginMontreal(2000),Seville(2002)andBangkok(2004).ThisgroupestablishedtheHemophiliaHomeofChinadevelopingawebsite.Theyhavebeenveryactiveintheircommunitiespromotingpatientcareandparticipation.ManypatienteducationmaterialshavebeentranslatedintoChinesebythisgroup.PatientGroupActivities/LeaVisionforaNationalStrategy2001-2004Asthesecentresmatured,sharingofexpertiseandresourcesstrengthened.Throughthiscollaboration,thevalueofaNationalBodytocoordinatedevelopmentofHemophiliaCareinthecountrywasrealized.VisionforaNationalStrategyAttheRegionalHemophiliaCareConference,Guangzhou,Nov2001,theprofessionalgroupsagreedon:(1)Threepriorityprojectsforurgentdevelopment:

(i)ANationalRegistry (ii)HemophiliaNursing (iii)Coagulationtestingworkshops.(2)AstrategytoformulateaNationalBody,later formalizedasthe“HemophiliaTreatmentCentreCollaborativeNetwork,China”.AttheRegionalHemophiliaCarProjectProgressNationalRegistry

–Projectchair:Dr.RenchiYang,Tianjin.Established2002.Currentregistrants=4132patients(approx.%5ofestimatedPWHinChina).PosterpresentationinBangkok.HemophiliaNursing

–ProjectChair:Dr.JingSun,Nanfang.TwoHemophiliaNursingconferencesNovember2003,October2004.PosterpresentationinBangkok.CoagulationTestingWorkshop

–ProjectChair:Dr.XuefengWang,Shanghai,April2005ProjectProgressNationalRegis2002–2004:

ACountryProgramwitha

HemophiliaTreatmentCentreNetwork,ChinaBetween2002–2003Dr.MCPoonand Dr.KHLukevisitedcentresinBeijing,Tianjin,Jinan,Shanghai,HefeiandGuangzhouandreceivedunanimoussupportforaNationalNetwork.AproposalforaCountryProgramforChinawassupportedbyWFH.AWFHHemophiliaConferencewasheldtoestablishthenetworkin2004inShangdongBloodCenter,Jinan,Shangdong.2002–2004:

ACountryPrograWFHHemophiliaConference

March2004,Jinan,China

AtthisconferencetheHemophiliaTreatmentCentreCollaborativeNetworkChinawasformalized.Thesixfoundingmembersare:1.

HemophiliaCentre,InstitutionofHematology,Tianjin2.

HemophiliaCentre,NanfangHospital,Guangzhou3.

HemophiliaCentre,RuijinHospital,Shanghai4.

HemophiliaCentre,PekingUnionMedicalCollegeHospital,Beijing5.

HemophiliaCentre,AnhuiProvincialHospital,Hefei6.

HemophiliaClinic,ShandongBloodCentre,JinanAgreatachievementwasthevastrepresentationof150professionalsfrom25cities/provinces.WFHHemophiliaConference

MANETWORKOFHEMOPHILIATREATMENTCENTRESHASBEENESTABLISHEDASASOLIDFOUNDATIONTOPROMOTEHEMOPHILIA CAREINCHINAFORTHEFUTURE.ANETWORKOFHEMOPHILIATREATChallengesAheadMAJORTARGETS1.ProvideaccessiblecaretomorepatientswithHemophiliaOutreachprogramsEducationWorkshopsHemophiliaNursingPatientgroupleaders/activities

2.Provideaff