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SCD registeries

Submitter:

Dr Oyesola OJEWUNMI

Contact Emails (insert as many as you like):

oyesola16@yahoo.com,sojewunmi@sicklecellfoundation.com

Organization:

Sickle Cell Foundation Nigeria

Country Organization is based:

Nigeria

Country Data was collected:

Nigeria

SCD Phenotypes being collected:

Acute Complications of Sickle Cell Disease, Alpha Thalassemia, Bone Pain, Fetal Hemoglobin, Hemoglobin A2, Hemoglobin S, High Reticulocyte Count, Leg Ulcer, Pain, Priapism, Reduced Hemoglobin A, Sickle Cell Disease-SC, Sickle Cell Disease-SS, Stroke, Vaso-Occlusive Crisis

Data collected Start Date:

2018-08-06

Data collected End Date (if it exists):

N/A

Frequency of collection (eg: Every 6 months):

Every week

Size of SCD cohort:

4000

Size of Controls:

Age ranges of cohort (Youngest – Oldest in years):

2 - 65

Website Link to your dataset:

N/A

Key publications around your dataset (links to pubmed):

N/A

Research area you might be interested in collaborating with other SCD researchers?:

Genetics of fetal haemoglobin; Genotype - Phenotype association studies in SCD

Does your ethical approval allow data sharing?:

Not Sure

Funders:

N/A

Name & Surname of a Trainee from your group:

N/A

Do you genotype data for some/or all of your samples?

Yes

Please add any comments/suggestions/questions:

At our centre, we have been collecting series of data since 2011 but not well coordinated. We used to recruit anew each time we want to carry out a study but last year August, I initiated a proforma to collect data and also take blood samples for genomic studies. Right now, we are creating a database for proper data collection for all our clinical and laboratory services/programmes including genetic counselling, stroke prevention programme (we have at least 7 000 children that have undergone this procedure from within and outside Lagos) and prenatal diagnosis. Again, we launched in June 2019, a Sickle cell disease registry in Nigeria (a multi - centre registry) with the objectives to support management and quality of care of persons with SCD, promote clinical research, foster health promotion, education, and disease prevention programmes, amongst others. So, I'm optimistic that our collaborative efforts will be fruitful and look to understating operation modalities of the NETWORK.

Please indicate whether you are willing to be a Lead PI for a multi-site collaborative research study:

Yes