ArticleOrphanet journal of rare diseases2020
Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry.
Article in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
26 citing papers in PubMed, 35 citations in OpenAlex.
- Accurate identification of sickle cell disease cases in a large genotyped cohort using electronic health record data.Blood advances · 2026Article
- Novel use of a hash-based tokenization for sharing sickle cell disease data without sharing protected health information.Blood advances · 2026Article
- Sustainment of Hydroxyurea Adherence in Patients With Sickle Cell Disease.JAMA network open · 2026Observational
- Experience in the adoption of Research Electronic Data Capture (REDCap) as a tool for medical research in Tanzania.medRxiv : the preprint server for health sciences · 2025Article
- Patient-reported pregnancy loss and maternal complications: Insights from the sickle cell disease implementation consortium.International journal of gynaecology and obstetrics: the official organ of the International Federation of Gynaecology and Obstetrics · 2025Article
- Depression, sleep and pain affect instrumental activities of daily living through cognitive functioning in adults with sickle cell disease: A report from the Sickle Cell Disease Implementation Consortium.British journal of haematology · 2025Article
- Epigenetic Aging Associations With Psychoneurological Symptoms and Social Functioning in Adults With Sickle Cell Disease.Biological research for nursing · 2024Article
- Opioid Control for Patients With Sickle Cell Anemia in Emergency Departments in the Western Region of Saudi Arabia.Cureus · 2024Article
- The clinical spectrum of HbSC sickle cell disease-not a benign condition.British journal of haematology · 2024Article
- Social determinants of health and treatment center affiliation: analysis from the sickle cell disease implementation consortium registry.BMC health services research · 2024Article
- Article
- Characterizing epigenetic aging in an adult sickle cell disease cohort.Blood advances · 2024Article
- Burden of Aging: Health Outcomes Among Adolescents and Young Adults With Sickle Cell Disease.HemaSphere · 2023Article
- Infertility and treatment-seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry.Pediatric blood & cancer · 2023Article
- Health literacy correlates with abbreviated full-scale IQ in adolescent and young adults with sickle cell disease.Pediatric blood & cancer · 2023Article
- Examining Mental Health, Education, Employment, and Pain in Sickle Cell Disease.JAMA network open · 2023Article
- Characterising the prevalence of overweight and obese status among adults with sickle cell disease.British journal of haematology · 2023Article
- Evaluating Associations between Average Pain Intensity and Genetic Variation in People with Sickle Cell Disease: An Exploratory Study.Pain management nursing : official journal of the American Society of Pain Management Nurses · 2023Article
- An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Pregnancy outcomes with hydroxyurea use in women with sickle cell disease.American journal of hematology · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 9 institutions in 1 country.
Funding
Abstract
backgroundSickle cell disease (SCD) is an autosomal recessive blood disorder affecting approximately 100,000 Americans and 3.1 million people globally. The scarcity of relevant knowledge and experience with rare diseases creates a unique need for cooperation and infrastructure to overcome challenges in translating basic research advances into clinical advances. Despite registry initiatives in SCD, the unavailability of descriptions of the selection process and copies of final data collection tools, coupled with incomplete representation of the SCD population hampers further research progress. This manuscript describes the SCDIC (Sickle Cell Disease Implementation Consortium) Registry development and makes the SCDIC Registry baseline and first follow-up data collection forms available for other SCD research efforts.
resultsStudy data on 2400 enrolled patients across eight sites was stored and managed using Research Electronic Data Capture (REDCap). Standardized data collection instruments, recruitment and enrollment were refined through consensus of consortium sites. Data points included measures taken from a variety of validated sources (PHENX, PROMIS and others). Surveys were directly administered by research staff and longitudinal follow-up was coordinated through the DCC. Appended registry forms track medical records, event-related patient invalidation, pregnancy, lab reporting, cardiopulmonary and renal functions.
conclusionsThe SCDIC Registry strives to provide an accurate, updated characterization of the adult and adolescent SCD population as well as standardized, validated data collecting tools to guide evidence-based research and practice.
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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.