SCD registeries
Submitter:
Dr Miriam Flor Park
Contact Emails (insert as many as you like):
Organization:
Hospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo
Country Organization is based:
Brazil
Country Data was collected:
Brazil
SCD Phenotypes being collected:
Abdominal Vaso-Occlusive Crisis
Data collected Start Date:
2014-04-01
Data collected End Date (if it exists):
2018-04-01
Frequency of collection (eg: Every 6 months):
12 months
Size of SCD cohort:
2794
Size of Controls:
Age ranges of cohort (Youngest – Oldest in years):
0-77
Website Link to your dataset:
N/A
Key publications around your dataset (links to pubmed):
Research area you might be interested in collaborating with other SCD researchers?:
sickle cell disease cohort, hydroxyurea, treatment, transplant, transfusion, genetics, genomics, GWAS studies
Does your ethical approval allow data sharing?:
Yes
Funders:
N/A
Name & Surname of a Trainee from your group:
Miriam Flor Park
Do you genotype data for some/or all of your samples?
Yes
Please add any comments/suggestions/questions:
I have participated as principal investigator in my institution of a Brazilian Sickle cell disease cohort, which was a multicentric study sponsored by NIH. I have worked in patients selection and recruitment, data collection, reports to IRB and writing related papers. I did not participate in writing grants, signing contracts or managing budgets. I don't have experience in these areas.
Please indicate whether you are willing to be a Lead PI for a multi-site collaborative research study:
Maybe