Browse
Submit Data
Databases
API
Help

Dataset Information

0 Views

0 Connections

0 Citations

0 Reanalyses

0 Downloads

Omics score: 0

Sickle Cell Disease Implementation Consortium Registry (SCDIC Registry-BioLINCC)

ABSTRACT: Sickle Cell Disease Implementation Consortium Registry (SCDIC Registry-BioLINCC)

PROVIDER: PRJNA1300503 | ENA |

REPOSITORIES: ENA

ACCESS DATA

Json Xml

Similar Datasets

Sickle Cell Disease Implementation Consortium Registry (SCDIC Registry-BioLINCC)

Project description:Sickle Cell Disease Implementation Consortium Registry (SCDIC Registry-BioLINCC)

| PRJNA1300502 | ENA

Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 3 (ROC-Cardiac Epistry 3-BioLINCC)

Project description:Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 3 (ROC-Cardiac Epistry 3-BioLINCC)

| PRJNA1143086 | ENA

Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 3 (ROC-Cardiac Epistry 3-BioLINCC)

Project description:Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 3 (ROC-Cardiac Epistry 3-BioLINCC)

| PRJNA1143087 | ENA

Lung Tissue Research Consortium (LTRC-BioLINCC)

Project description:Lung Tissue Research Consortium (LTRC-BioLINCC)

| PRJNA1219700 | ENA

Lung Tissue Research Consortium (LTRC-BioLINCC)

Project description:Lung Tissue Research Consortium (LTRC-BioLINCC)

| PRJNA1219699 | ENA

Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 1 and 2 (ROC-Cardiac Epistry 1 and 2-BioLINCC)

Project description:Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 1 and 2 (ROC-Cardiac Epistry 1 and 2-BioLINCC)

| PRJNA1169110 | ENA

Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 1 and 2 (ROC-Cardiac Epistry 1 and 2-BioLINCC)

Project description:Resuscitation Outcomes Consortium (ROC) Cardiac Epidemiologic Registry (Cardiac Epistry) Version 1 and 2 (ROC-Cardiac Epistry 1 and 2-BioLINCC)

| PRJNA1169112 | ENA

North American Mitochondrial Disease Consortium Patient Registry and Biorepository - NAMDC 7401

Project description:North American Mitochondrial Disease Consortium Patient Registry and Biorepository - NAMDC 7401

| PRJNA433273 | ENA

North American Mitochondrial Disease Consortium Patient Registry and Biorepository - NAMDC 7401

Project description:North American Mitochondrial Disease Consortium Patient Registry and Biorepository - NAMDC 7401

| PRJNA433272 | ENA

Publication of data collection forms from NHLBI funded sickle cell disease implementation consortium (SCDIC) registry.

Project description: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.

| S-EPMC7341606 | biostudies-literature

OmicsDI is part of the ELIXIR infrastructure

OmicsDI is an Elixir interoperability service. Learn more ›

Tweets

OmicsDI Databases

PRIDE
PeptideAtlas
MassIVE
JPOST Repository
Physiome Model Repository

EGA
EVA
ENA
LINCS
PAXDB
Cell Collective

MetaboLights
Metabolomics Workbench
MetabolomeExpress
GNPS
BioModels
FAIRDOMHub

ArrayExpress
dbGaP
ExpressionAtlas
GEO
NODE

Information

Databases
Help
API
Contact us
Code on GitHub
Terms of use
Submit Data