egyptian national registry on rbd condition of other emro states
DESCRIPTION
Egyptian National Registry on RBD Condition of Other EMRO States. Magdy El Ekiaby, MD Shabrawishi HTC. Edwin Smith Papyrus. Modern Egypt. National Registry of Hereditary Bleeding Disorders (HBD). First specialized unit for diagnosis of HBD in CHL, 1968 (referral lab) - PowerPoint PPT PresentationTRANSCRIPT
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21/05/06 ISTH, RBD, Vancouver
Egyptian National Registry on RBD
Condition of Other EMRO States
Magdy El Ekiaby, MDShabrawishi HTC
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21/05/06 ISTH, RBD, Vancouver
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21/05/06 ISTH, RBD, Vancouver
Edwin Smith Papyrus
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21/05/06 ISTH, RBD, Vancouver
Modern Egypt
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21/05/06 ISTH, RBD, Vancouver
National Registry of Hereditary Bleeding Disorders (HBD)
• First specialized unit for diagnosis of HBD in CHL, 1968 (referral lab)
• Establishment of ESH, 1971 with mutual registry of HBD since then
• University hospital hematology labs confirm their diagnosis in CHL which allows for central registration
• All diagnosed patients are referred to ESH for registration and will have an ID
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21/05/06 ISTH, RBD, Vancouver
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21/05/06 ISTH, RBD, Vancouver
ESH
CHL University HTC
9 university hosp 9 out of 14 centers
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21/05/06 ISTH, RBD, Vancouver
Registry of HBD, 2005 (5064 patients)
3203756
375
730
A
B
vWD
others
Courtesy of Dr. Nadia Moharram, CHL, 2005
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21/05/06 ISTH, RBD, Vancouver
National Registry of RBD, 2005 (403 patients)
93
0
123483
59
77 0FI
FII
FV
FVII
FV & VIII
FX
FXI&XII
FXIII
10 cases of FXIII deficiency diagnosed in the centers & not included in National Registry
Courtesy of Dr. Nadia Moharram, CHL, 2005
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21/05/06 ISTH, RBD, Vancouver
Characteristics of National Registry
• Diagnosis is dependent on phenotyping
• No genotyping• Cumulative registry since 1971,
actual number of diagnosed cases, who are still living is not defined
• The registry committee is working on its verification
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21/05/06 ISTH, RBD, Vancouver
EMRO States Registry
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21/05/06 ISTH, RBD, Vancouver
Communication
• E mails using the address book of Dr. Assad Haffar for EMRO and Africa
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21/05/06 ISTH, RBD, Vancouver
National Registry of Rare Hereditary Bleeding Disorders
• Country:-• Institution:-• Name of contact person:-• Telephone:- E Mail address:-• Questions:-
– Is there a national registry for HBD?– Does the registry include RHBD?– Number of Diagnosed cases of:-
• FI, FII, FV, FVII, FV& VIII, FX, FXI&XII, FXIII
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21/05/06 ISTH, RBD, Vancouver
Response
• Response from:-– Morocco:- no registry– Algeria:- no registry– KSA:- no registry– Kenya:- no registry– Botswana:- one case FX– Lebanon:- to be verified– Qatar :- center registry– Pakistan:- chapter registry– Jordan:- hospital based registry– South Africa:- national registry– Lesotho:- no registry
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21/05/06 ISTH, RBD, Vancouver
QatarPakistan, Lahore
Pakistan, Islamabad/
Rawalpindi
Jordan (Al
Bashir H.
South Africa
FI04209
FII00200
FV0116141
FVII276417
FV&VIII00004
FX056410
FXI&XII510329
FXIII34064
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21/05/06 ISTH, RBD, Vancouver
DiagnosisEgyptEMRO& Africa
FI9315
FII02
FV12359
FVII4836
FV&VIII34
FX5926
FXI&XII7738
FXIII10*17
*from centers & not in registry
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21/05/06 ISTH, RBD, Vancouver
Acknowledgement
• M El Khorassani, Morocco• L Lamhene & S El Fegoun, Algeria• H B Jibril, Botswana• G Zaher, KSA• M Walter, Kenya• T Zafar, Rawalpindi, Pakistan• S Sohail, Lahore, Pakistan• A Khoriaty, Lebanon• M Abulaban, Qatar• M Alfallah, Jordan• Anne-Louise Cruikshank, South Africa• Grace Phiri, Lesotho
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21/05/06 ISTH, RBD, Vancouver
Delighted to have you all in Cairo 2010,
&
Thank You