The Cure Sickle Cell Initiative (CureSCi) was established in 2018 by the National Heart, Lung, and Blood Institute to accelerate the development of treatments aimed at a genetic-based cure for sickle cell disease (SCD).

A component of CureSCi, the Data Consortium, is creating a robust data resource with three overarching goals:


Assist in recruiting patients for SCD curative therapy clinical trials by supporting the prospective collection of data to enable the establishment of contemporaneous controls and potential patient cohorts.

Advance science to develop safe and effective SCD curative therapies by cataloguing, harmonizing and standardizing data collection.

Organize and share data across the sickle cell community - by leveraging NHLBI data resources and polices.

NHLBI SCD Data Resources

CureSCi MetaData Catalog provides study documentation and a list of curated data elements

BioData Catalyst provides access and cloud computing space to phenotypic and genotypic data

BioLINCC provides access to phenotypic data and biospecimens collected on NHLBI funded clinical studies