An overview of the medical genetics and data sharing activities in the Democratic Republic of Congo

1. HUMAN GENETICS IN DR CONGO:
A RAPIDLY EVOLVING STORY
Prof LUKUSA TSHILOBO Prosper, MD, PhD
President of the Congolese Society for Human Genetics (CoSHG)
Prof LUMAKA ZOLA Aimé, MD, PhD
Centre for Human Genetics, UNIKIN

3. DR Congo
• Second biggest African country: 2.345.409 km2
• The most populated French speaking country:
– ± 80.000.000 inhabitants
• Kinshasa: ± 10 millions inhabitants
• 3 main Universities and 1 Biomedical research
center

4. Enormous needs for genetic services
• High prevalence of sickle cell disease (SCD):
– 25-34% AS
– 2% SS new-borns
– 80% death < 5 years
• Albinism: cutaneous carcinoma in 33%
• Intellectual disability: 27 % with genetic defects

5. History of genetics in DR Congo

6. 1966
Today
History of genetics in DR Congo

7. Prof. H Van den Bergh et al. from KUL, laboratory
and research activities (Down Syndrome)
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

8. No genetic service
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

9. Prosper Lukusa, from KU Leuven:
• Genetics back to UNIKIN
• Conferences for practitioners
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

10. • Undergraduate courses
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

11. • Courses for interns and professors
• Genetic clinics
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

12. • Extension to Lubumbashi
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

13. • Constitution of genetic team at Lubumbashi
and Kinshasa for clinic and research
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

14. • Implementation of DNA extraction facility
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

15. • Prosper Lukusa appointed as fulltime Professor
of human genetic at Kinshasa and visiting
professor at Lubumbashi
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

16. • Creation of the Congolese Society for Human
Genetics
• HVP country node in 2013
• 1st congress of the CoSHG
• 2nd congress of the CoSHG
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

17. • In and out-clinics:
– Developmental delay
– malformations
– SCD
– Albinism
– others
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

18. • Laboratory: molecular testing for SCD and1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

19. • Regional networking: constitution of network
of geneticists from French speaking countries
since 2013
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

20. • Research: 10 ongoing projects + publications
1966
Today
1978
2007
2011
2013
2015
2008
2009
2010

21. Thank You