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Expansion of PhenX Measures for Sickle Cell Disease (SCD) Research

In 2019, the National Heart, Lung, and Blood Institute (NHLBI) provided co-funding to expand the collections of sickle cell disease (SCD) measures in the PhenX (consensus measures for Phenotypes and eXposures) Toolkit (www.phenxtoolkit.org). As a result of this project, two Specialty Collections (Curative Therapies and Pain) of standard measures have been added to the Toolkit. Three additional Specialty Collections (Psychosocial and Social Determinants of Health, Genitourinary, and Pregnancy) and one domain (Bone and Joint) will be added to the Toolkit in the fall and winter of 2022. Consistent use of the standard measures in these Collections will establish a common currency to help researchers to better understand the etiology, progression, and treatment of SCD.

The Expansion of PhenX Measures for Sickle Cell Disease Research Collections are the result of a collaborative, consensus effort by the extramural scientific community and staff members at NHLBI and the National Human Genome Research Institute (NHGRI). Further details about the Expansion of PhenX Measures for Sickle Cell Disease (SCD) Research project can be found here.

Specialty Collection

The measures in Curative Therapies and Pain Specialty Collections are complementary to SCD Core: Tier 1 and SCD Core: Tier 2 and are deemed relevant and essential within these more specialized research domains. The Curative Therapies Specialty Collection includes 13 protocols that address risk factors and outcomes related to transfusion and transplantation. The Pain Specialty Collection includes 22 protocols that address pain location, pain intensity, pain burden, and pain impact on daily life.