Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.

Partnerships and Networks in Africa - Léon Tshilolo

263 views

Published on

An overview of existing partnerships and networks in Africa for haemoglobinopathy research and care

Published in: Science
  • Login to see the comments

  • Be the first to like this

Partnerships and Networks in Africa - Léon Tshilolo

  1. 1. Partnerships and networks in Africa Léon Tshilolo, MD, PhD GG2020 /HVP6 Paris, UNESCO, 30-31 May 2016
  2. 2. What about REDAC? • Willing of reducing the suffering, exclusion, morbidity and mortality in SCA patients • Date and place of birth: May 2010, Kinshasa
  3. 3. Redac countries • Gabon • Cameroon • Tanzania • Centre Africa Republic • Republic of Congo • Angola • Zambia • Uganda • Kenya • Burundi • Rwanda • Sudan • DR Congo
  4. 4. Redac Policy and perspectives • Unity in the diversity • Actions > good intentions • Promotion of national networks or consortiums • Open to other partners: – Sickle Charta – SCDIO Partenership North South – Global network – Reach – CADRE
  5. 5. Statute of the REDAC
  6. 6. Mission and social object
  7. 7. Members of the REDAC
  8. 8. Representative members of Redac countries
  9. 9. Human resources • Academics • Practitioners • Nurses • Informatics and Statisticians • Administrative workers • SCD Associations
  10. 10. 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
  11. 11. • Pulmonar Respiratory Fonctions (Spirometry) • CT-Scan • MR Imaging • Laboratory: IEF, HPLC, Capillary Elect, Biochemistry, Haematology, etc TOOLS of INVESTIGATION
  12. 12. 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)
  13. 13. Chronic blood transfusion program Limitations of Chronic transfusion program Blood transmitted diseases: HIV, CHV, BHV, malaria, Blood donors policy Allo-immunisations
  14. 14. 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
  15. 15. Access to Hydroxyurea treatment Indications: Severe form of SCD Limited access : High cost! REACH study: children<10 yrs Angola DRC Kenya Uganda
  16. 16. 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
  17. 17. OTHER NETWORKS or GROUPS
  18. 18. Participation in multicentric studies and Projects • REACH • CP Drepano • CADRE • Others
  19. 19. Angola, Kenya, Uganda DR Congo and USA Hydroxyurea in children 1-10 yrs Data base on line : Redcap
  20. 20. CADRE Research
  21. 21. Program of SCD management in Africa and Madagascar/ AFD funds
  22. 22. 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.
  23. 23. REDAO West Africa SCD network • Abudja 2015 • Need help to federate the English and French speaking countries
  24. 24. Global network of SCD
  25. 25. 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
  26. 26. The need of a Regional Collaboration and North-South parternership Thank you/ Merci Dank U/Aksanti

×