newborn screening for sickle cell disease in ghana ... programme of newborn screening for sickle...
Post on 26-Apr-2018
248 Views
Preview:
TRANSCRIPT
National Programme of Newborn Screening for Sickle Cell Disease
Newborn Screening
for
Sickle Cell Disease in Ghana
----------
Update
Prof. Kwaku Ohene-Frempong, MD
Children‟s Hospital of Philadelphia
University of Pennsylvania
Sickle Cell Foundation of Ghana
Sickle Cell Foundation of Ghana
Sickle Cell Foundation of Ghana
Why screen newborns for
sickle cell disease?
Newborn Screening for SCD
Causes of Death in SCD-SS (0-10 yr)
(Gill FM, et al, CSSCD: 1995) Overall incidence: 1.1/100 person-yrs
Sickle Cell Foundation of Ghana
Newborn Screening for SCD
Age (yr) <3 3-5 6-9 10-19 >20
No. pts. 459 571 630 958 983
Person-yr. 752 1025 1333 2843 3480
No. events 60 26 14 18 30
Incidence/ 7,979 2,536 1,050 633 862
105 Pr-yr
Deaths 11 1 4 0 2
(Zarkowsky,et al. CSSCD; J Pediatr 1986:579-585)
Bacteremia in SCD-SS Disease, CSSCD
Sickle Cell Foundation of Ghana
Newborn Screening for SCD
Age (yr) <1* 1-1.9 2-2.9 3-3.9 4-4.9 5-5.9
No. pts. 291 342 362 393 430 434
Pt.yrs. 188 268 296 334 346 345
No. events 12 17 17 3 5 4
Incidence 6,382 6,343 4,696 898 1,445 1,159
105 Pr-yr
US (98-99)^ 171 214 65 29 16
* 3 patients were younger than 6 months of age
^ MMWR, 2008 :57; 144
(Zarkowsky,et al. CSSCD; J Pediatr 1986:579-585)
Incidence of Strep. pneumoniae
in SCD-SS Disease, CSSCD
Sickle Cell Foundation of Ghana
Newborn Screening for SCD
Sickle Cell Foundation of Ghana
Newborn Screening for SCD
Sickle Cell Foundation of Ghana
Penicillin Placebo
No.of patients 105 110 (Person-yr 131.25 137.5)
Age 3-36m
Pneumovax 67% 71.6%
---------------------------------------------------------------------
Pneumococcal sepsis 2 13
(Incidence/105 Pr-yr 1,524 9,455)
Deaths 0 3
(Youngest septic patient: 6 mo. old)
(Gaston, et al. CSSCD; NEJM 1986:1593-99)
Penicillin Prophylaxis Study (I), CSSCD
Newborn Screening for SCD
Sickle Cell Foundation of Ghana
Newborn Screening for SCD
Pneumococcal Disease in Africa
Williams, et al., Lancet. 2009 Oct 17;374(9698):1364-70.
Interpretation
Introduction of conjugate vaccines against S pneumoniae and
H influenzae into the childhood immunisation schedules of
African countries could substantially affect survival of children
with sickle-cell anaemia
Infection in Sickle Cell Disease Malaria and Bacteremia Risks in SCD – Kenya
7164 hospitalized children, < 5y, living on the coast of Kenya
Age-adjusted odds ratios for disease-specific admission by Hb S genotype
Case category Hb AA Hb AS p* SCA p*
Uncomplicated
malaria 1
0.24 (0.17-
0.36) <0.001
0.43 (0.09-
2.10) 0.30
Severe malaria 1 0.12 (0.08-
0.18) <0.001
0.80 (0.25-
2.51) 0.70
Non-malaria
illnesses 1
0.78 (0.60-
1.01) 0.066
4.17 (1.95-
8.92) <0.001
Bacteremia 1 0.60 (0.48-
0.76) <0.001
8.73 (4.51-
16.89) <0.001
S. pneumoniae 1 15.3 (7.3-
35.1) <0.001
McAuley, et al., Blood. 2010 Sep 9;116(10):1663-8.
Newborn Screening for SCD
Values are ORs (95% CI) compared with the reference group (HbAA) adjusted for age group
(0-23 months, 24-59 months) by logistic regression.
Newborn Screening
for Sickle Cell Disease in Ghana
Kumasi-Tikrom Pilot Project
Sickle Cell Foundation of Ghana
Newborn Screening for SCD in Ghana
Sickle Cell Foundation of Ghana
Kumasi-Tikrom Pilot Project
Project Funding
1. U.S. Government:
National Heart, Lung, and Blood Institute (NHLBI) of
National Institutes of Health (NIH), Comprehensive Sickle
Cell Center Grant: 1993 - 1998; 1998 - 2003; 2003 – 2008
2. Government of Ghana
Ministry of Health and Ghana Health Service
- Staff
3. Children‟s Hospital of Philadelphia (CHOP)
- Staff and donations
4. General public
- donations
Newborn Screening for SCD in Ghana
Results: Feb 15, 1995 – Dec 31, 2011
Babies with SCD totaled 6,025 (1.75%)
Hb Phenotype Number Percentage
F 63 0.01
FA 259449 75.6
FAC 30253 8.9
FAS 45785 13.3
FC 1637 0.5
FS 3186 1.0
FSA 27 0.008
FSC 2812 0.8
OTHER 143 0.04
TOTAL 343,355 100
Babies with Possible SCD 6,025 1.8
Total accounted for 5,637 100.0
Lost to follow-up 784 13.9
Total contacted 4,853 86.1
(19% reported, 81% tracked)
Dead by contact date 43 0.76
Eligible for enrollment 4,810
Known dead after enrollment 4.5
No. (%)
Total screened with results 343,355
Newborn Screening for SCD in Ghana
Tracking Results: Feb 15, 1995 – Dec 31, 2011
Still under active tracking 388 6.4
Clinic Population
SCD Clinic started on 14th December, 1992
with 10 adult patients
Total Number of registered patients in
Clinic by 30th September, 2011:
Newborn screened: 4,028
Non-newborns: 8,168
GRAND TOTAL 12,196
KUMASI CENTER FOR SICKLE CELL DISEASE
Appointments-Routine Clinic Visits
Frequency of well-child visits:
Less than 2 yrs: Every 2 mo
More than 2 yrs: Every 3 mo
Adolescents and adults: every 4-6 mo
• Patients may be seen more frequently
depending on clinical status
Kumasi Centre for Sickle Cell Disease
Antimicrobial Prophylaxis
Penicillin prophylaxis:
o Recommended for the first five years but may be
optional after 5 years
o 125 mg twice daily (< 3 yr old);
o 250 mg twice daily (> 3 yr old).
o Erythromycin ethyl succinate (EES) 10
mg/kg/dose, twice daily for those allergic to
penicillin
Anti-malaria Chemoprophylaxis: ?? Unclear
recommendation: NMCP POLICY for high
risk subjects
Kumasi Centre for Sickle Cell Disease
Newborn Screening for SCD in Ghana
Sickle Cell Foundation of Ghana
Conclusions
Kumasi-Tikrom Pilot Project
1. Newborn screening for SCD makes sense in Africa.
2. Implementation of a Public Health Newborn Screening
Programme is feasible in Ghana in both rural and urban
settings.
3. Ghanaian healthcare systems and staff can support all
phases of comprehensive management of SCD.
4. Children with SCD born in Ghana, diagnosed at birth and
given comprehensive healthcare, have reduced mortality.
Sickle Cell Foundation of Ghana
1. US funding for pilot project ended March 2008
2. Screening has continued with support from MOH,
GHS, Children‟s Hospital of Philadelphia, and Sickle
Cell Foundation of Ghana (SCFG)
3. SCFG proposal for national scale-up submitted to
Ministry of Health 2006 and 2007
4. 2007-2010: Planning meetings among MOH, Ghana
Health Service, SCFG, National Health Insurance
Authority
5. SCFG secures support from Brazil Government
Progress Report (1/2)
Newborn Screening for SCD in Ghana
Sickle Cell Foundation of Ghana
6. Brazil-Ghana Technical Cooperation Agreement in
SCD signed (Sep 2009)
7. National Programme of Newborn Screening for SCD
launched Nov 2010
• Technical Advisory Committee inaugurated
• Screening Plan submitted to MOH, Nov 2011
• Steering Committee being established
8. National scale-up in ALL other Regions, 2012
9. Initial Regional Training Workshops completed Nov,
2011.
Progress Report (2/2)
Newborn Screening for SCD in Ghana
Technical Advisory Committee
DRAFT POLICY FOR NEWBORN SCREENING IN GHANA
AND
TECHNICAL PLAN
FOR
NATIONAL SCALE UP OF NEWBORN SCREENING
FOR SICKLE CELL DISEASE
November 1, 2011
Ghana: National Newborn Screening Program
Sickle Cell Foundation of Ghana
Population: 25.2 million
Birth Rate: 26.99 / 1,000 population
No. of Births: 680,148
SCD Rate: 1.8% (pilot newborn screening data)
No. SCD babies 12,243
SCD Births in Ghana (2012 Estimates)
Newborn Screening for SCD in Ghana
Ghana: National SCD Programme
Sickle Cell Foundation of Ghana
Organization of Centres for Sickle Cell Disease
National Coordinating Centre
Regional Centre for SCD
Sub-Regional Centres for SCD
Initial Education and Training Program
Training Program 1: Public Health Workers
Training Program 2: Clinical Staff of Centers
Training Program 3: “Sample Collectors”
Training Program 4: Data Entry Staff
Counselor Training and Certification Program
Ghana: National Newborn Screening Program
Ghana: National Newborn Screening Program
Training Program 1
Regional Workshops
on
Newborn Screening for Sickle Cell Disease
Ghana: National Newborn Screening Program
Training Program 1:Regional Workshops
H
H
H
H H
H
H
Ghana: National Newborn Screening Program
NNbSP-SCD Training Program 1 (2011)
Trainees by Profession
Community
Health
Nurses
General
Nurses
Public
Health
Nurses
Midwives Doctors Physician
Assists.
Others
TOTAL
60
(10.9)
80
(14.5)
85
(15.4)
127
(23.0)
111
(20.0)
54
(9.8)
34
(6.4)
551
(100)
Ghana: National Newborn Screening Program
NNbSP-SCD Training Program 1 (2011): Trainees
REGIONS %
Midwives
%
Nurses
%
Prescriber
s
% Other
Professions
Total #
Professionals
(%)
Ashanti 25.9 44.4 27.8 1.9 54 (9.8)
Brong Ahafo 29.5 41.0 29.5 0.0 61 (11.1)
Central 28.2 38.0 32.4 1.4 71 (12.9)
Eastern 26.3 36.3 35.0 2.5 80 (14.5)
Great. Accra 6.1 58.5 35.4 0.0 82 (14.9)
Northern 17.0 51.1 29.8 2.1 47 (8.5)
Upper East 16.7 50.0 33.3 0.0 24 (4.4)
Upper West 9.1 81.8 9.1 0.0 11 (2.0)
Volta 23.6 47.3 29.1 0.0 55 (10.9)
Western 32.8 34.3 32.8 0.0 67 (12.2)
ALL Regions 125 (22.7) 247 (44.8) 174 (31.6) 5 (0.9) 551 (100)
Workshop on
Newborn Screening
for Sickle Cell Disease
Pre- and Post-Test
Sickle Cell Foundation of Ghana
Test No. of
Participants
Average
% Correct
Median %
Correct
Pre-Test 412 64 + 28.3 69
Post-Test 397 85 + 14.3 86
Newborn Screening Workshop
Pre- and Post-test
Sickle Cell Foundation of Ghana
List the four most common types of SCD
Question 3
Test % Correct
Pre-Test 1
Post-Test 84
Newborn Screening Workshop
Pre- and Post-test
Sickle Cell Foundation of Ghana
Young children with severe SCD lose
function of their spleen after 5 years of age
Question 17
True / False
Test % Correct
Pre-Test 44
Post-Test 35
Newborn Screening Workshop
Pre- and Post-test
Sickle Cell Foundation of Ghana
What is the most important treatment after
newborns are diagnosed with SCD?
Question 24
Test % Correct
Pre-Test 8
Post-Test 90
National Newborn Screening Program
Training Program 1: Regional Workshop
Takoradi, Western Region, Nov 11-12, 2011
National Newborn Screening Program
Training Program 1: Regional Workshop
Koforidua, Eastern Region, Nov 17-18, 2011
1. October 2008: Application is submitted by Sickle Cell Foundation
of Ghana to Brazilian Ambassador to Ghana
2. February 2009: Prof. Ohene-Frempong meets with President
Mills; and, President Mills meets with Brazilian Ambassador
3. July 2009: 1st Complementary Agreement is signed in Accra
(Complementary to original 1974 Brazil-Ghana Technical
Cooperation Agreement)
4. August-October 2009: Training in Brazil (Lab Techs and Nurses)
5. October 2009: Year 1 Technical Agreement is signed in Brazil
6. February 2011: 2nd Complementary Agreement is signed in Accra
Sickle Cell Foundation of Ghana
International Partnership in SCD: Ghana
Brazil-Ghana Partnership
Program Areas
1. Expansion of Screening Laboratory Capacity
2. Training of Lab Technologists, Nurses
3. Development of Educational Materials and Educational
Program
4. Expansion of IT system and network
5. Construction of Blood and Sickle Cell Center in Kumasi
Sickle Cell Foundation of Ghana
International Partnership in SCD: Ghana
Brazil-Ghana Partnership
Thank you!
Brazil-Ghana Technical Cooperation in SCD Training of Technicians in Brazil, August 2009
Brazil-Ghana Technical Cooperation in SCD2nd Brazilian
Delegation Meets President Mills, Dec „09
Brazil-Ghana Technical Cooperation in SCD Asantehene Fetes 2nd Brazilian Delegation, Dec „09
Brazil-Ghana Technical Cooperation in SCD Asantehene Fetes 2nd Brazilian Delegation, Dec „09
Brazil-Ghana Blood and Sickle Cell Center
Computer Model
Brazil-Ghana Blood and Sickle Cell Center
Computer Model
Brazil-Ghana Technical Cooperation in SCD
Brazil-Ghana Blood and Sickle Cell Center
Survey of Plot at KATH
Brazil-Ghana Technical Cooperation in SCD
Kumasi Blood and Sickle Cell Center
Groundbreaking, Nov 25, 2010
top related