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Egyptian National Registry on RBD Condition of Other EMRO States

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)

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Egyptian National Registry on RBD Condition of Other EMRO States

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  1. Egyptian National Registry on RBDCondition of Other EMRO States Magdy El Ekiaby, MD Shabrawishi HTC ISTH, RBD, Vancouver

  2. ISTH, RBD, Vancouver

  3. Edwin Smith Papyrus ISTH, RBD, Vancouver

  4. Modern Egypt ISTH, RBD, Vancouver

  5. 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 ISTH, RBD, Vancouver

  6. ISTH, RBD, Vancouver

  7. ISTH, RBD, Vancouver

  8. Courtesy of Dr. Nadia Moharram, CHL, 2005 ISTH, RBD, Vancouver

  9. 10 cases of FXIII deficiency diagnosed in the centers & not included in National Registry Courtesy of Dr. Nadia Moharram, CHL, 2005 ISTH, RBD, Vancouver

  10. 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 ISTH, RBD, Vancouver

  11. EMRO States Registry ISTH, RBD, Vancouver

  12. Communication • E mails using the address book of Dr. Assad Haffar for EMRO and Africa ISTH, RBD, Vancouver

  13. 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 ISTH, RBD, Vancouver

  14. 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 ISTH, RBD, Vancouver

  15. ISTH, RBD, Vancouver

  16. *from centers & not in registry ISTH, RBD, Vancouver

  17. 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 ISTH, RBD, Vancouver

  18. Delighted to have you all in Cairo 2010, & Thank You ISTH, RBD, Vancouver

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