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:
2013-01-01
Data collected End Date (if it exists):
2015-12-31
Frequency of collection (eg: Every 6 months):
every 12 months
Size of SCD cohort:
3000
Size of Controls:
0
Age ranges of cohort (Youngest – Oldest in years):
0-71
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?:
severity of the disease, clinical complications, biomarkers, GWAS studies
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:
I have experience in collecting data, analysing data, reporting to IRB. I have some experience in publishing papers using extracted data and sharing ideas in collaboration. I don't have experience in leading multi-site research, but only leading collaborators from my center to perform the research.
Please indicate whether you are willing to be a Lead PI for a multi-site collaborative research study:
No