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NHLBI Comprehensive
Sickle Cell Centers

Public Information Website

Information for Researchers

Collaborative Data Project

The ten Comprehensive Sickle Cell Centers, in collaboration with the Statistics and Data Management Center, have developed a "Collaborative Data Project". This project will collect demographic and medical information on a large number of sickle cell patients at the ten funded Comprehensive Sickle Cell Centers.

These data will allow us to get a better understanding of sickle cell patients, and provide a pool of potential subjects, who may be contacted to participate in research studies.

This data project was designed to collect a large amount of baseline information, at the first visit. Similar information would be collected semi-annually thereafter, to assess any changes that occurred since the previous assessment. Additionally, quality of life data is collected. Enrollment began in the spring of 2005.

You can view and/or download these forms.