ArticleBlood advances2017
Standard measures for sickle cell disease research: the PhenX Toolkit sickle cell disease collections.
Article in Blood advances, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
23 citing papers in PubMed, 1 synthesis or guideline pooled it, 32 citations in OpenAlex.
- Systematic review of outcome reporting in studies of SCD and pregnancy: marked heterogeneity hinders meaningful data synthesis.Blood advances · 2023Pooled it
- The SickleFit Tele-Exercise Program for older adults with sickle cell disease: feasibility, acceptability, safety study.Blood red cells & iron · 2026Article
- Retinal imaging and supervised learning predict hospitalizations and kidney and heart-lung damage in sickle cell disease.Blood advances · 2026Observational
- Frailty phenotype in adults with sickle cell disease.The journals of gerontology. Series A, Biological sciences and medical sciences · 2026Article
- Criterion validity of the functional status and pain assessment scale versus pain and length of stay in hospitalized adults with SCD.Journal of sickle cell disease · 2026Article
- Article
- Preliminary validity of a daily functional status pain assessment tool.Journal of sickle cell disease · 2025Article
- "I can't let it stop me": perspectives on aging from older adults with sickle cell disease.Journal of sickle cell disease · 2025Article
- Recommended measurement protocols for sickle cell disease in the PhenX toolkit: psychosocial factors and social determinants of health.Journal of sickle cell disease · 2025Article
- Preliminary construct validity of patient-reported outcomes to assess chronic pain in adults with sickle cell disease.Blood advances · 2023Article
- Intraindividual pain variability metrics for youth with sickle cell disease: Relations to health outcomes.Pediatric blood & cancer · 2023Article
- Precision, integrative medicine for pain management in sickle cell disease.Frontiers in pain research (Lausanne, Switzerland) · 2023Review
- Identifying Datasets for Cross-Study Analysis in dbGaP using PhenX.Scientific data · 2022Article
- The Sickle Cell Disease Functional Assessment (SCD-FA) tool: a feasibility pilot study.Pilot and feasibility studies · 2022Article
- Article
- Barriers to hydroxyurea use from the perspectives of providers, individuals with sickle cell disease, and families: Report from a U.S. regional collaborative.Frontiers in genetics · 2022Article
- Clinical trial considerations in sickle cell disease: patient-reported outcomes, data elements, and the stakeholder engagement framework.Hematology. American Society of Hematology. Education Program · 2021Review
- Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry.Orphanet journal of rare diseases · 2020Article
- Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care.JAMA network open · 2020Article
- Geriatric assessment for older adults with sickle cell disease: protocol for a prospective cohort pilot study.Pilot and feasibility studies · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 7 institutions in 1 country.
Funding
Abstract
Standard measures and common data elements for sickle cell disease (SCD) will improve the data quality and comparability necessary for cross-study analyses and the development of guidelines that support effective treatments and interventions. In 2014, the National Institutes of Health, National Heart, Lung, and Blood Institute (NHLBI) funded an Administrative Supplement to the PhenX Toolkit (consensus measures for Phenotypes and eXposures; https://www.phenxtoolkit.org/) to identify common measures to promote data comparability across SCD research. An 11-member Sickle Cell Disease Research and Scientific Panel provided guidance to the project, establishing a core collection of SCD-related measures and defining the scope of 2 specialty collections: (1) cardiovascular, pulmonary, and renal complications, and (2) neurology, quality-of-life, and health services. For each specialty collection, a working group of SCD experts selected high-priority measures using a consensus process that included scientific community input. The SCD measures were released into the Toolkit in August 2015. The 25 measures included in the core collection are recommended for use by all NHLBI-funded investigators performing human-subject SCD research. The 10 neurology, quality-of-life, and health services measures and 14 cardiovascular, pulmonary, and renal measures are recommended for use within these specialized research areas. For SCD and other researchers, PhenX measures will promote collaborations with clinicians and patients, facilitate cross-study analysis, accelerate translational research, and lead to greater understanding of SCD phenotypes and epigenetics. For clinicians, using PhenX measures will help elucidate the etiology, progression, and treatment of SCD, leading to improved patient care and quality of life.
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.