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

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, three Specialty Collections (Curative Therapies, Pain, and Psychosocial and Social Determinants of Health) and one domain (Bone and Joint) of standard measures have been added to the Toolkit. Two additional Specialty Collections (Genitourinary, and Pregnancy) will be added in 2023. 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, Pain, and Psychosocial and Social Determinants of Health 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.
• The Psychosocial and Social Determinants of Health Specialty Collection includes 10 protocols that address transition readiness, stigma, responses to stress, and trust in medical care and research.