This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 824021

Newborn screening (nbs) for sickle cell disease in Kaduna: the

journey so farLivingstone G. Dogara

Department of Haematology, Faculty of Basic Clinical Sciences, Kaduna State University College of Medicine

Kaduna NBS Working Group

Sickle Cell Cohort Research Foundation (SCORE, www.scorecharity.com) Abuja

Affiliations/Conflict of Interest

• Affiliations • Kaduna State University

• Barau Dikko Teaching Hospital

• Africa Research and Innovative Initiative for Sickle Cell Education (ARISE)

• Sickle Cell Cohort Research Foundation (SCORE, www.scorecharity.com) Abuja

• The Sickle Pan-African Research Consortium (SPARCO)

• Haemophilia Foundation of Nigeria

• Conflict of interest • None

BDTH-KASU Haematology

• Inpatient services for paediatrics sickle persons

• Inpatient services for adult sickle persons

Introduction

•What is the aim of the session?• Effective communication and collaboration

•What will be covered in the session?• Journey so far

• Little but giant steps

Screening

• Screening is defined as:

“a public health service in which members of a defined population, who do not

necessarily perceive they are at risk of, or are already affected by, a disease or it’s

complications, are asked a question or offered a test to identify those individuals

who are more likely to be helped than harmed by further tests or treatment to

reduce the risk of disease or it’s complication”

Second Report of the

UK National Screening

Committee

Newborn Screening

Why screen newborns for sickle cell disease?

•Early administration of prophylactic penicillin markedly reduces the incidence of pneumococcal sepsis

•Clinical monitoring reduces morbidity and mortality

•Neonatal screening for β-thalassaemia major and other thalassaemias useful but less important

Newborn Screening: Outcome

Overall outcome to be achieved

• Mortality rate in children of under 5 of less than 2 deaths per 100 affected infants

Others

• Cascade family screening

• To target at risk families and offer future genetic choice

• To allow better Health Service resource planning

Nigeria Demography

Population Est. 200.96m (2019 proj.)

Population Growth Rate: 2.6% (2017 est.)

Birth Rate: 38.89 births/1000 births

SCD births: >150,000/year in Nigeria

Death Rate: 12.4 deaths/1,000 population (2017 est.)

Inusa, et al., Pediat Therapeut 2015, 5:3 DOI: 10.4172/2161-0665.1000262

https://nigerianstat.gov.ng › download

Population Est. 8.9m (2019 proj.)

Population Growth Rate: 2.6% (2017 est.)

Birth Rate: 38.89 births/1000 births

Delivery by health professionals: 40.4%

Delivery without assistance: 28.8%

Facility based delivery rate: 32.4%

Antenatal visit attendance: 30% (2008), 43.8% (2017)

Kaduna Pilot NBS (2010-2011): 4000 babies

Inusa, et al., Pediat Therapeut 2015, 5:3 DOI: 10.4172/2161-0665.1000262

https://kdbs.ng/app/uploads/2019/06/KADUNA-STATE-SDGs-WATCH-1.pdf

https://nigerianstat.gov.ng › download

Kaduna Sickle Cell Screening Programme – The ideal

1) Antenatal Screening Programme

AIM: Identify mothers at risk of having an affected fetus

-High Prevalence (fetal prevalence SCD ≥1.5 / 10,000 pregnancies)

-Low Prevalence (fetal prevalence SCD <1.5 / 10,000 pregnancies)

2) Newborn screening Programme

-Universal

AIM: identify babies affected by SCD

3) Prenatal Diagnosis and DNA diagnostic services

AIM: To give a definitive diagnosis

ARISE

Little but Giant Steps

• 2009-2011: Pilot Study, Katsina/Kafanchan/London Sickle Cell Nigeria Focus Group (Inusa, et al., Pediat Therapeut 2015, 5:3 DOI: 10.4172/2161-0665.1000262)

• 2013: NBS reagents exhausted

• 2014: Line of communications opened with KDSG

• 2016: ASH, AfroSicklenet, ASCAT (J Trop Dis Public Health. 2018; 6(2): 26)

• 2017-2018: Collaboration with partners

• 2019: RCPath LabSkill Africa/IEF CESTRA Installation training

• 2020: ASH CONSA

What do you want to know?

Source: Bennett and Rockwell, 1995, Targeting Outcomes of Programs

Social-economic-environmental impacts

2009-2017 Planning Meetings – Katsina/Kafanchan/London SCD Nigeria Focus Group

FGD 2017

ARISE/EHA: 2018-2019

Call to Action: ASH Assessment visit/LabSkillAfrica 2018-2019

Ongoing

▪ Regular training workshops

▪ Policy review and updating

▪ Incident reporting and review

▪ Collection and review of key performance indicators

▪ Linking newborn and antenatal screening results

▪ Newborn outcomes project

Successes

• Government support and program approval• MoU between SCORE and KDSG

• Academic and other partner support (BDTH, KASU, ABU, ABUTH, MOH, SPHCDA, FantsuamFoundation, SSCF)

• ASH CONSA support

• ARISE Exchange/RCPAth LabSkill Africa Standardization of diagnosis and care

• Use of tools in management

Futuristic

• Ability to design a framework of inter-agency and intra-agency collaboration

• Being ready for partnership and collaboration (ASH education programme, BSH, Academic institution)

• Influencing national decision on guidelines for care of the sickle

• Develop framework/curriculum for holistic sickle care (Genetic counselling, school screening, pre-marital counselling)

• To use framework in standardizing care of other genetic disorders

Policy Framework

“There is no passion to be found playing small - in settling for a life that is less than

the one you are capable of living.”

Nelson Mandela Former President of South Africa

Thank You

This presentation reflects only the author(s)’s view and the EU Research Executive Agency (REA) is not responsible for any use that may be made of the

information it contains.

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 824021