Stroke Registry for Children and Young Adults With Sickle Cell Disease in Nigeria – The Afolabi Stroke Registry

Locations

2 Nigeria sites

1 United States site

Age

5 to 26 Years

Study type

Observational [Patient Registry]

Gender

All

Interventions

Other

Compensation

Unknown

About the study

Sickle Cell Anemia (SCA) occurs in 300,000 newborns per year in the world, with 150,000
affected births in Nigeria, alone. With improvement in survival for children with SCA in both
high- and low-resource countries, neurological morbidity is an emerging significant public
health challenge, particularly in countries with a high rate of sickle cell disease (SCD).
Both silent cerebral infarcts (SCI) and overt strokes result in significant neurological
morbidity and premature death. Five NIH-funded randomized controlled trials (RCT)
demonstrated that regular blood transfusion or hydroxyurea therapy are efficacious treatments
for primary and secondary stroke prevention in children with SCA. Despite the observation
that at least 99% of children with SCA in high-resource settings reach adulthood, and
approximately 60% of adults will experience one or more strokes (~50% with SCI and ~10% with
overt strokes) and the high disease-burden in Nigeria, the prevalence and incidence rates of
new and recurrent stroke (overt and silent strokes)have not been collected systematically in
children and young adults (16-25 years old) with SCA. In the last decade, there has been
growing use of stroke registries in economically advanced nations, particularly for
epidemiological purposes of trend analysis, clinical effectiveness, compliance to guidelines,
assessment of implementation, adoption of novel techniques, and quality improvement process.
For the first time in clinical centers in Nigeria, the Investigators will conduct an
observational epidemiological study to document the prevalence and track the incidence of new
and recurrent strokes in children and young adults with SCD. The Investigators will create a
stroke registry referred to as the Afolabi Stroke Registry for Children and Young Adults with
Sickle Cell Disease in Nigeria. The overall purpose of the stroke registry is to document the
natural history of SCD in a low-resource setting and to improve the quality of the care of
children and young adults with SCD living in Nigeria.

participation requirements

– Participants with sickle cell disease confirmed with hemoglobin electrophoresis or
HPLC

– Age 5 to 26 years old

– Present within three months of stroke event that is diagnosed as a stroke by the local
health care provider

– Medical records are available for review for the stroke event that occurred within 3
months

– Prior treatment in the SPIN, SPRING and SPRINT trials for primary or secondary stroke
prevention

participation restrictions

– Participants judged to be non-compliant by the hematologist based on previous
experience in terms of clinic appointments and following advice

– Participants with contraindications to MRI, including individuals with MRI-
incompatible foreign metal objects

Locations

  • Nashville, Tennessee, United States, Vanderbilt University Medical Center, 37232-9000
  • Kano, Nigeria, Jamil Galadanci, PMB 3452
  • Kano, Nigeria, Aminu Kano Teaching Hospital