Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry
| Autor: | Jeffrey A. Glassberg, Elizabeth A. Linton, Katrina Burson, Tabitha Hendershot, Joseph Telfair, Julie Kanter, Victor R. Gordeuk, Allison A. King, Cathy L. Melvin, Nirmish Shah, Jane S. Hankins, Axel Yannick Epié, Lynne D. Richardson, for the Sickle Cell Disease Implementation Consortium |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Adult
medicine.medical_specialty Adolescent Electronic data capture Population lcsh:Medicine Anemia Sickle Cell Disease SCDIC registry forms 03 medical and health sciences 0302 clinical medicine Basic research Surveys and Questionnaires Humans Medicine Pharmacology (medical) Registries education Genetics (clinical) education.field_of_study Data collection business.industry Research Sickle cell disease Medical record lcsh:R General Medicine United States Blood Disorder 030220 oncology & carcinogenesis Family medicine Standardized data collection tools Data collecting National Heart Lung and Blood Institute (U.S.) business 030217 neurology & neurosurgery Accurate characterization |
| Zdroj: | Orphanet Journal of Rare Diseases Orphanet Journal of Rare Diseases, Vol 15, Iss 1, Pp 1-6 (2020) |
| ISSN: | 1750-1172 |
| Popis: | Background Sickle 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. Results Study 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. Conclusions The 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. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|
Full text from SpringerLink