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

1. Partnerships and networks in
Africa
Léon Tshilolo, MD, PhD
GG2020 /HVP6
Paris, UNESCO,
30-31 May 2016

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. Redac countries
• Gabon
• Cameroon
• Tanzania
• Centre Africa Republic
• Republic of Congo
• Angola
• Zambia
• Uganda
• Kenya
• Burundi
• Rwanda
• Sudan
• DR Congo

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. Statute of the REDAC

6. Mission and social object

7. Members of the REDAC

8. Representative members of Redac
countries

9. Human resources
• Academics
• Practitioners
• Nurses
• Informatics and Statisticians
• Administrative workers
• SCD Associations

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. • Pulmonar Respiratory Fonctions (Spirometry)
• CT-Scan
• MR Imaging
• Laboratory: IEF, HPLC, Capillary Elect,
Biochemistry, Haematology, etc
TOOLS of INVESTIGATION

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. Chronic blood transfusion program
Limitations of Chronic transfusion
program
Blood transmitted diseases: HIV,
CHV, BHV, malaria,
Blood donors policy
Allo-immunisations

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. Access to Hydroxyurea treatment
Indications: Severe form of SCD
Limited access : High cost!
REACH study: children<10 yrs
Angola
DRC
Kenya
Uganda

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. OTHER NETWORKS or GROUPS

18. Participation in multicentric studies
and Projects
• REACH
• CP Drepano
• CADRE
• Others

19. Angola,
Kenya,
Uganda
DR Congo
and USA
Hydroxyurea in
children 1-10 yrs
Data base on line :
Redcap

20. CADRE Research

21. Program of SCD management in Africa
and Madagascar/ AFD funds

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. REDAO
West Africa SCD network
• Abudja 2015
• Need help to federate the English and French
speaking countries

24. Global network of SCD

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. The need of a Regional Collaboration and
North-South parternership
Thank you/ Merci
Dank U/Aksanti