SCD registeries
Submitter:
Ms Lilian Giibwa
Contact Emails (insert as many as you like):
Organization:
Makerere University
Country Organization is based:
Uganda
Country Data was collected:
Uganda
SCD Phenotypes being collected:
Abnormal Red Blood Cell Deformability
Data collected Start Date:
2019-11-11
Data collected End Date (if it exists):
N/A
Frequency of collection (eg: Every 6 months):
N/A
Size of SCD cohort:
0
Size of Controls:
0
Age ranges of cohort (Youngest – Oldest in years):
N/A
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?:
Survival analysis of SCD patients, Efficacy of treatments for SCD, Study of biomarkers, Incidence and incidence rate of SCD
Does your ethical approval allow data sharing?:
No
Funders:
N/A
Name & Surname of a Trainee from your group:
N/A
Do you genotype data for some/or all of your samples?
No
Please add any comments/suggestions/questions:
In Uganda, at the Sickle Cell clinic at Mulago National Referral Hospital, Sickle Cell disease data hasn't been a major focus in collection, management and analysis terms. However, going forward, after the fourth SCD Ontology, Makerere University is going to work in collaboration with the SCD clinic at Mulago Hospital and other SCD research sites to extract data sets from which multi-site retrospective and multi-site prospective cohort/ clinical trials and others research studies will be conducted.
Please indicate whether you are willing to be a Lead PI for a multi-site collaborative research study:
No