2018
Characteristics of undiagnosed diseases network applicants: implications for referring providers
Walley NM, Pena LDM, Hooper SR, Cope H, Jiang YH, McConkie-Rosell A, Sanders C, Schoch K, Spillmann RC, Strong K, McCray AT, Mazur P, Esteves C, LeBlanc K, Undiagnosed Diseases Network, Wise AL, Shashi V. Characteristics of undiagnosed diseases network applicants: implications for referring providers. BMC Health Services Research 2018, 18: 652. PMID: 30134969, PMCID: PMC6106923, DOI: 10.1186/s12913-018-3458-2.Peer-Reviewed Original ResearchConceptsObjective findingsSubjective symptomsUndiagnosed diseaseUndiagnosed Diseases NetworkAccepted applicationFurther diagnostic processesPrimary care providersPrimary care physiciansSystematic retrospective reviewSubspecialty consultsPrimary outcomeCare physiciansRetrospective reviewSpecialty consultationReferral lettersSpecialist consultationFunctional disordersCare providersSubjective findingsDemographic dataSymptomsReferral sourceOlder individualsDiagnostic effortsPatients
2017
A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network
Spillmann RC, McConkie-Rosell A, Pena L, Jiang YH, Undiagnosed Diseases Network, Schoch K, Walley N, Sanders C, Sullivan J, Hooper SR, Shashi V. A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network. Orphanet Journal Of Rare Diseases 2017, 12: 71. PMID: 28416019, PMCID: PMC5392939, DOI: 10.1186/s13023-017-0623-3.Peer-Reviewed Original ResearchConceptsUndiagnosed Diseases NetworkUndiagnosed illnessesObjective findingsUndiagnosed diseaseUnique illness experiencesIllness narrativesHumane medical careDisease networkUndiagnosed patientsChild's illnessChild healthcareAdult probandsMedical careIllnessIllness experienceHealthcare optionsPatientsProbandsAdultsHealthy lifeSymptomsDiseaseChild managementPersonal medical informationMedical information