A Learning Health Systems Approach to Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis in Children
| dc.contributor | Children's Hospital Colorado |
| dc.contributor | Patient-Centered Outcomes Research Institute |
| dc.contributor.author | Bloom, Jessica |
| dc.contributor.other | Children's Hospital Colorado |
| dc.date.accessioned | 2024-07-09T19:50:28Z |
| dc.date.available | 2024-07-09T19:50:28Z |
| dc.description | Anti-neutrophil cytoplasmic antibody-associated vasculitis (AAV) is an understudied, chronic inflammatory disease in children for which only half of children reach remission by 6-months and approximately 7% do not survive past young adulthood. Due to its rarity, there are no large observational studies or randomized control trials to guide management. Additionally, there is a known discordance between patient and physician global assessments among patients with rheumatic disease, with physician scores most influenced by objective measures (e.g., laboratory or imaging results) and patient scores most influenced by perceived quality of life. The optimal way to incorporate both patient and provider values into a standard of care for children with AAV is unknown, yet critical to improving outcomes in this patient population. A learning health systems (LHS) model is the ideal mechanism to transform the care of children with AAV from non-evidence based intuitive care to personalized care that is informed by both patients and providers. The overall objective of this study is to build the foundation for a LHS for children with AAV through both clinical outcome validation and patient engagement. |
| dc.description.abstract | Study to build the foundation for a learning health system for children with Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) by describing the population of children with AAV and setting the foundation for clinical outcome validation and future studies. The primary aim of the initial study phase is to identify the demographic, clinical features, and management of children with AAV. |
| dc.identifier.uri | https://pedsnet.org/metadata/handle/20.500.14642/689 |
| dc.publisher | PEDSnet |
| dc.relation | Antineutrophil Cytoplasmic Antibodies (ANCA) |
| dc.rights | a CC-BY 4.0 Attribution license. |
| dc.rights.uri | https://creativecommons.org/licenses/by-sa/4.0/ |
| dc.subject | Study::Funded Study::PEDSnet Study |
| dc.subject | Study::Investigator-Led Study |
| dc.subject.mesh | Vasculitis |
| dc.subject.mesh | Vascular Diseases |
| dc.title | A Learning Health Systems Approach to Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis in Children |
| dspace.entity.type | Study |
| local.admin.note | Elana is the PM, and the data scientists is Briana Kille at Colorado. https://chop365.sharepoint.com/:f:/r/teams/RSCH-ACRC/Shared%20Documents/PEDSnet/PEDSnet%20Scholars/Project%20Deliverables%20and%20Milestones/Engagement%20Plans/Cohort%203/Bloom,%20Jessica?csf=1&web=1&e=Us8nbj |
| local.subject.flat | PEDSnet Data Source |
| local.subject.flat | Investigator-Led Study |
| project.endDate | 2024-08 |
| project.startDate | 2022-09 |
| relation.isConceptSetOfStudy | 5a5c74a7-807c-4cf4-8dad-bc31f5a9c485 |
| relation.isConceptSetOfStudy.latestForDiscovery | 5a5c74a7-807c-4cf4-8dad-bc31f5a9c485 |
| relation.isOrgUnitOfStudy | 097b646c-d7bd-47f5-a4db-e7b0881e2ad6 |
| relation.isOrgUnitOfStudy.latestForDiscovery | 097b646c-d7bd-47f5-a4db-e7b0881e2ad6 |