partnerships and networks in africa - léon tshilolo
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Partnerships and networks in Africa
Léon Tshilolo, MD, PhDGG2020 /HVP6 Paris, UNESCO, 30-31 May 2016
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What about REDAC?
• Willing of reducing the suffering, exclusion, morbidity and mortality in SCA patients
• Date and place of birth: May 2010, Kinshasa
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Redac countries• Gabon• Cameroon• Tanzania• Centre Africa Republic• Republic of Congo• Angola• Zambia• Uganda• Kenya• Burundi• Rwanda• Sudan• DR Congo
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Redac Policy and perspectives• Unity in the diversity• Actions > good intentions• Promotion of national networks or consortiums• Open to other partners:
– Sickle Charta– SCDIOPartenership North South – Global network– Reach– CADRE
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Statute of the REDAC
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Mission and social object
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Members of the REDAC
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Representative members of Redac countries
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Human resources
• Academics• Practitioners • Nurses• Informatics and Statisticians• Administrative workers• SCD Associations
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Kinds of available services
• Newborn Screening– Gabon – Cameroon - DR Congo– Angola – Kenya – Uganda, R Congo
• Transcutaneous oxymetry
• Trans Cranial Doppler • Cardiac echo-doppler : Tricuspidic reflux
(PAH)LT CEFA/CH MONKOLE 09
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• Pulmonar Respiratory Fonctions (Spirometry)
• CT-Scan
• MR Imaging
• Laboratory: IEF, HPLC, Capillary Elect, Biochemistry, Haematology, etc
TOOLS of INVESTIGATION
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Therapeutical Approaches
• Morphin : not so available (international legislation), fear of this use…
• Oral Penicillin: where newborn screening is available.• Folic Acid supplementation• Immunization: high cost, not sytematic
- Heamophilus- 23 valent vaccin (Pneumo)- 13 valent Prevnar(available since 2011)
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Chronic blood transfusion program
Limitations of Chronic transfusion program
Blood transmitted diseases: HIV, CHV, BHV, malaria,
Blood donors policy
Allo-immunisations
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Perspective of Chronic Blood Tranfusion
• To introduce a more large blood group typing
• To identify some selected donors ( blood adoption)
• To reduce the immune reactions (auto and allo)
• To introduce the apheresis system
• To provide iron chelation therapy
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Access to Hydroxyurea treatment
Indications: Severe form of SCD
Limited access : High cost!
REACH study: children<10 yrsAngolaDRCKenya Uganda
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Limiting factors in SS countries
• Lack of comprehensive SCD program
• Lack of well trained health workers
• Insufficient good and appropriate equipments
• Very few networks and partenerships
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OTHER NETWORKS or GROUPS
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Participation in multicentric studies and Projects
• REACH
• CP Drepano
• CADRE
• Others
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Angola,Kenya,Uganda
DR Congoand USA
Hydroxyurea in children 1-10 yrs
Data base on line : Redcap
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CADRE Research
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Program of SCD management in Africa and Madagascar/ AFD funds
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Sickle CHARTA• Sickle CHARTA is a Consortium for Health,
Advocacy, Research and Training in Africa for Sickle Cell Disease (SCD).
• The consortium is set up to bring together academicians, researchers, healthcare providers and interested individuals to promote, strengthen and develop health, advocacy, research and training in sickle cell disease in Africa.
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REDAOWest Africa SCD network
• Abudja 2015
• Need help to federate the English and French speaking countries
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Global network of SCD
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What we need and what we can do?
• Educational and training program
• Accessible and adapted tools– Urban areas – Rural areas
• Data base collection and National or Regional Registrer
• A good and complete phenotyping: to write the natural history of SCD in Africa
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The need of a Regional Collaboration and North-South parternership
Thank you/ Merci
Dank U/Aksanti