Kesho Conference 2014

1. SICKLE CELL DISEASE REGISTRY AND
PREVALENCE OF SICKLE CELL DISEASE
IN KENYA
IS IT FEASIBLE?
BY
DR. CONSTANCE N.TENGE
SENIOR LECTURER/PAEDITRICIAN
MOI UNIVERSITY-CHS-SOM

2. Contents
 About sickle cell disease
 Burden of sickle cell disease
 Public health concern about SCD
 A National SCD control programme
 Academic mission
 SCD registry and prevalence of SCD in
Kenya.
 Is it feasible?
References

3. About sickle cell disease
 Sickle cell Anaemia / Drepanocytosis.
Various cell genotypes or variants of
the sickle cell syndrome:
Hb AS (SCT) Hb SD- Punjab
Hb SS etc
Hb SC
Genetic or hereditary blood disorder
 Inheritance –Autosomal recessive
Perpetuation of the sickle cell gene
can be controlled.

4. Percentage Chance
Normal
Hb AA
Carrier
Hb AS
Disease
HB SS
Hb AA Hb AA 100 - -
Hb AA Hb AS 50 50 -
Hb AA Hb SS - 100 -
Hb AS HB AS 25 50 25
Hb AS HB SS - 50 50
Hb SS HB SS - - 100

5. Burden of sickle cell disease
 Millions of people throughout the world are affected.
 Ancestors lived in tropical and subtropical -Subsaharan
regions
–African, African-American Mediterranean (Italian, Sicilian,
Greek), Middle East, East Indian, Caribbean ,Central or South
American descent.
 75-85% of cases occur in Africa.
 Affects up to 3% births.
 6-9 million infants are born with SCD in Africa each year.
 10-40% carrier frequency across equatorial Africa (Kenya 28-
35%).

6. U.S.A
 U.S.A
1:5000 affected :90 000 cases : 2.5 million
herogenous carriers.
FRANCE
1 in 2500 affected : 8750 carriers
UNITED KINGDOM
1 in 2000 births with SCD

7. Public Health concern
 Public health Implications of sickle cell disease are
significant :
-High morbidity and mortality (5% under five deaths)
- Socio-economic burden
 No firm data on burden and survival of patients with
SCD on the African Continent.
 Management of SCD in most African countries remains
inadequate.
 National SCD control programmes do not exist.

8. The need for a National Control Programme
 Provide a comprehensive approach to prevention
and management of SCD.
 Simple affordable and accessible technology that
is feasible so as to benefit a large proportion of
the community
 Healthcare system able to provide basic
requirements
 EDUCATION and RESEARCH activities to provide
evidence based practice and fill the knowledge gap.

9. Academic Mission
 EDUCATION
-Training of health care workers on prevention, diagnosis and management.
-Public Education and awareness on genetic risks and carrier detection before
marriage or pregnancy
 CARE
-regional working group experts to coordinate activities and develop
guidelines and work closely with primary care providers.
-Health care system that should provide the basics to patients( Pen V, Folate,
Hydroxyurea )
- Carrier detection screening programme ( Sickling test )
- Neonatal screening
 RESEARCH
-Research and surveillance
- Vital statistics reporting systems to guide changes in health policy.
-Planning and evaluating appropriate interventions.

10. SCD registry and prevalence of SCD
Aim
 To set up a sickle cell registry and determine the
prevalence of sickle cell disease in Kenya
Objectives
 To set up a sickle cell registry in Kenya
 To describe the socio- demographic characteristics of
patients with sickle cell disease in Kenya
 To evaluate the care received by the patients
 To provide a data base for other studies on Sickle Cell
Disease

11. NAMES
Constance N. Tenge 1, Wilson K. Bett 2, Mercy Mulaku 3, Festus M.
Njuguna 4, Meshack Liru 2, Teresa C Lotodo 1 , Pamela A Were 4 ,
Sarah Awino 4, Juliana Otieno 5, Evallyne S Sikuku 6, Rachael Nyamae
2, Anne Wamae 2, Fatuma Abdalla7 , Walter Mwanda 7, Mike English3.
AFFILIATIONS
1 . Moi University – College of Health Sciences( MU – CHS )
2 . Ministry of Health – Government of Kenya ( MOH – GOK )
3 . Kenya Medical Research Institute ( KEMRI )
4 . Moi Teaching and Referral Hospital ( MTRH )
5 . Jaramogi Oginga Odinga Teaching and Referral Hospital ( JOOTRH )
6. Academic Model Providing Access To HealthCare ( AMPATH )
7. University of Nairobi - College of Health Sciences ( UON – CHS )

12. METHODS
 Preparation of relevant education material and
dissemination.
- Health care providers-conferences and workshops,
CMEs. etc.
- Communities - baraza’s hospitals ,health camps etc.
 Gradual and target the different regions/ provinces
systematically
- Level 4,5 and 6 government hospitals
- Mission and private hospitals
 Identify the patients and profile them-use of
questionnaires
-demographic characteristics
-family information
-Mode of Diagnosis of SCD
-Medical information.

15.  ?? SCD Registry
 ?? Prevalence of SCD in Kenya.
 ?? National SCD control programme.
IS IT FEASIBLE? ??
What role can you play??

16. REFERENCES
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red blood corpuscles in a case of severe
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 Lazarus, Hillard M.; Schmaier, Alvin H. (2011).
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17. Cont..
 Kumar, Vinary; Abbas, Abul K.; Fausto, Nelson; Aster,
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18. Cont..
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19. Cont..
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20. Cont…
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21. Cont…
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