Sickle Cell Cohort Study: A Sustainable Pilot Scheme

Short title

Sickle Cell Cohort Study

Start date - End date

Wed, 09/30/2009 to Wed, 03/30/2011

Brief description of the initiative

This project aimed to improve survival and quality of life for children with Sickle Cell Disease (SCD) by instituting early infant diagnosis and establishing standardised care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation. The project was implemented in Nigeria, the country with the highest disease prevalence, with the help of UK-based doctors, largely Nigerian migrants. The issue is particularly relevant in the targeted country in that the majority of SCD patients in the UK arrive from Nigeria and West Africa and the high mortality in Nigeria is a deterrent for those patients and families returning to Nigeria.

Results and lessons learned

The project trained laboratory staff and nurse counsellors and purchased a HPLC machine that facilitated improved diagnosis of sickle cell disease. Joint work with community links and patient groups was put into place as well as efforts to ensure sustainability by working with State and Federal Government.

Status

Complete

Project number

N-253

Budget

196,500 Euros

Donors

JMDI, European Union

Partner country(ies)

United Kingdom

Main thematic areas

Migration and national development plans

JMDI Focus area

Balancing the negative impact of brain drain by identifying and attracting the right human capital amongst migrants for development
Building upon the capacities of highly skilled migrants as well as migrants professional/ entrepreneur associations for development

First name

Bola

Last name

Ojo

Position

Coordinator

Email

bolaibilola@yahoo.co.uk

Other partners

Michigan State University, USA Guy's & St Thomas NHS Foundation Trust, London

Main objectives

This project aimed to improve survival and quality of life for children with Sickle Cell Disease (SCD) by instituting early infant diagnosis and establishing standardised care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation. The project was implemented in Nigeria, the country with the highest disease prevalence, with the help of UK-based doctors, largely Nigerian migrants. The issue is particularly relevant in the targeted country in that the majority of SCD patients in the UK arrive from Nigeria and West Africa and the high mortality in Nigeria is a deterrent for those patients and families returning to Nigeria.

Country

Nigeria

Main activities

The main activities were to: conduct a hospital and community based survey of children aged less than 16 years, after obtaining informed consent from community leaders and parents for participation; the study determined the survival pattern of SCD, risk factors for severe disease and complications, and incidence of invasive bacterial disease and prevalence of hepatitis (B and C) and HIV infection in SCD children. Second, the project established early diagnosis of SCD through newborn screening.

Finally, the output of the project amounted to the establishment of a repository for DNA for studies on the genetic basis using the data collected, in collaboration with medical researchers in Ghana, the US and the UK, which allows investigation into risk factors for severe disease and complications in children with SCD.

Main beneficiaries

Main beneficiaries were those potentially exposed to Sickle Cell Disease, especially children.

Project Documents

  • These are pictures of the sickle cell group which meets monthly at the Fantsuam Foundation. The group is supported by nurse counsellors and they learn how to manage the disease and its effects on their children. They are also developing as advocates to raise awareness about the disease and influence local health policy to ensure sickle cell disease care pathways are integrated into health services in the area.

  • newspaper account of meeting with Katsina Gov Wife

  • The picture was taken at the occassion of the 50th Anniversary of Nigeria's independence when the Vice President Arc Namadi Sambo handed one of the six individual awards to the project lead for outstanding contribution to Nigeria in London (23 October at Alexandra Palace).

  • This information booklet introduces the efforts being undertaken by LFSCA, Zankli and Fantsuam Foundation, a consortium of Sickle Cell Support organisations working together to tackle the high level of sickle cell disease amongst Nigerian people.

    "Our mission is to raise awareness about this condition, to give hope to those affected and their families."

  • A new consortium for sickle cell research in Africa

  • A consortium is born to spearhead the sickle cell screening project in Nigeria

  • The N-253 project has become the catalise for sickle cell research in Nigeria. There is now a network of specialists working to improve services in Nigeria

Comments

The project continues to deliver on the objectives with over 5000 participants recruited and screened. There has been tremendous goodwill generated within the community, the community leaders and the State Government by the skilled efforts of all partners. Zankli and Fantsuam pool their resources and jointly conduct the community surveys. Already there are emerging strands of extension work that can develop as a result of the project, subject to funding. One key lesson to share is the strength of the partnership which is maintained by effective communication, working to each other's strengths, an understanding of the challenges faced on ground and the ability to jointly problem solve. With 4 months to go, all hands are on deck to ensure all the objectives are secured including the unintended benefits.

Bola Ojo
N253 Project Manager

There is ongoing discussion of a comprehensive bill on the control of sickle cell disease in Nigeria. The bill is co-sponsored by Senators Ifeanyo Okawa(Delta) and Nenadi Usman(Kaduna). This is the most effective way to ensure a sustainability of this project. There are two high Performance Liquid Chromatography(HPLC)-Abuja and Katsina and Isoelectric Focussing(IEF) in Anambra, Oyo and Kaduna States. These are some of the new diagnostic equipment coming to Nigeria on the back of the EC-UNDP project. The JMDI can do well to support the actualisation of a great initiative in Nigeria and whole of Africa.
Baba

The project has commenced with the training of laboratory staff and nurse counsellors and the purchase of a HPLC machine that will facilitate improved diagnosis of sickle cell disease.Joint work with community links and patient groups is ongoing as well as efforts to ensure sustainability by working with State and Fedral Government.

Will you be evaluating treatment options? Niprisan is a herbal treatment for sickle cell crisis and I would like to know its current status as the company that was manufacturing it is now insolvent.

The scope of the pilot study does not extend to an evaluation of the various treatment options that patients have resorted to in the absence of a clear treatment pathway follwoing accurate diagnosis. We are aware of the mentioned drug and the situation with the company. However, we are yet to find out about the current state of the licence for the drug.

A programme of events to launch the newborn sickle cell screening project is to coincide with the events of the world sickle cell day celebration - 18th June at Kafanchan Kaduna State and 19th Abuja Nigeria.
The activities include educational videos, radio and tv interviews, jingles which were jointly developed by the three partners- LFSCA-Mansag, Fantsuam Foundation Kafanchan and Zankli Medical Centre Abuja.
Volunteers are being recruited to provide free diagnosis to the public, health education and health promotion
The event will be opened by the executive Governor of Kaduna State, Mr Patrick Yakowa in Kafanchan and by the Federal Minstry of Health in Abuja
A fund riasing dinner will follow in the night at Abuja on the 19th June.
Baba Inusa
Chair, LFSCA and Chief Investigator

The project had an overwhelming experience in marking the global sickle cell day. All three partners-London Focus Sickle Cell Africa, Zankli and Fantsuam participated in a series of events to raise awareness of sickle cell disease and undertake the community survey screening large numbers from the community for the sickle cell trait. Both the State and Federal Government has been extremely supportive as well as community groups, high profile individuals and corporate support. Volunteers were trained to assist with screening and lab technicians on the use of the HPLC machine. The project is on target to achieve the planned outcomes and objectives.

June 2010, Dr Fatima Shema wife of the Katsina State Governor invited the N-253 project team to support her work on sickle cell disease. She was spearheading the work through the service to humanity foundation. The foundation started about two years before with 40 patients but now has over 8,000 patients who are receiving treatment and counselling in three sickle cell clinics- Daura, Katsina and Funtua.
The N-253 project have now offered expert advice through data management, diagnostics and recently January 2011 conducted community survey of children under five in Katsina, Dankama and Dutsin Ma. Over 800 children were surveyed on the 18 and 19 January, 2011.
N-253 team are establishing long term working relationships with Kaduna, Katsina states and the Federal Capital through signing of memorandum of understanding in order to sustain the current work.

Baba Inusa (Project lead-N-253)

I am Ajah philip (medical laboratory scientist)a corps member serving in National Assembly clinic, Abuja , as part of my contribution to community development , i am working on sickle cell disorder .please i need your help bcos if i identify a problem without solution i have done nothing, so in this reason i write.(08036336184)

PROGRAMMES

Ø Medical awareness campaign on sickle cell is our pilot program through which our effort towards the reduction in the reproduction of the sickle cell gene is channeled.

Ø Our Area of focus is on Bwari area council of Federal Capital Territory (FCT), which undoubtedly is the Area with the largest occurrence of sickle cell (SS) gene. It is estimated in Nigeria that about 150,000 babies are born with the SS gene every year. This campaign is sub-divided into four programmes

(1) MEDICAL AWARENESS CAMPAIGN PROGRAMME

Ø The FCT mass awareness programme is designed to reach the populace with up to date information on how to stop the reproduction of the SS gene. This information is to be communicated in English and Native Language.

Ø The various communication channels to be set up for the awareness programme includes.

1. Information booklets/hand bills

2. Sensitization walks

3. Public address system

4. Band boys

(2) SEMINAR/HEALTH WORKSHOP

These are training workshops which will be carried out to sensitize people in the locality and also to inform and equip both the single and married persons’ on how to make the right marital decisions.

(3) FREE GENOTYPE TESTING

This is a professional medical service conducted by licensed and registered medical laboratory Scientists. It offers free of charge test to selected beneficiaries that will be awarded with test Certificates.

(4) SICKLER’S PROGRAM

This is a service program offered to sickle cell anaemia sufferers who are selected as beneficiaries of the sickler’s care this section of the programme offers the following

a. Counseling for sickle cell anaemia sufferers and their families.

b. Advice on nutrition for proper body function

c. Follow-up on the sicklers’ health reports.

I am Ajah philip (medical laboratory scientist)a corps member serving in National Assembly clinic, Abuja , as part of my contribution to community development , i am working on sickle cell disorder .please i need your help bcos if i identify a problem without solution i have done nothing, so in this reason i write.(08036336184)

PROGRAMMES

Ø Medical awareness campaign on sickle cell is our pilot program through which our effort towards the reduction in the reproduction of the sickle cell gene is channeled.

Ø Our Area of focus is on Bwari area council of Federal Capital Territory (FCT), which undoubtedly is the Area with the largest occurrence of sickle cell (SS) gene. It is estimated in Nigeria that about 150,000 babies are born with the SS gene every year. This campaign is sub-divided into four programmes

(1) MEDICAL AWARENESS CAMPAIGN PROGRAMME

Ø The FCT mass awareness programme is designed to reach the populace with up to date information on how to stop the reproduction of the SS gene. This information is to be communicated in English and Native Language.

Ø The various communication channels to be set up for the awareness programme includes.

1. Information booklets/hand bills

2. Sensitization walks

3. Public address system

4. Band boys

(2) SEMINAR/HEALTH WORKSHOP

These are training workshops which will be carried out to sensitize people in the locality and also to inform and equip both the single and married persons’ on how to make the right marital decisions.

(3) FREE GENOTYPE TESTING

This is a professional medical service conducted by licensed and registered medical laboratory Scientists. It offers free of charge test to selected beneficiaries that will be awarded with test Certificates.

(4) SICKLER’S PROGRAM

This is a service program offered to sickle cell anaemia sufferers who are selected as beneficiaries of the sickler’s care this section of the programme offers the following

a. Counseling for sickle cell anaemia sufferers and their families.

b. Advice on nutrition for proper body function

c. Follow-up on the sicklers’ health reports.