2022
Sickle Cell Transplantation Evaluation of Long-term and Late Effects Registry (STELLAR) to Compare Long-term Outcomes After Hematopoietic Cell Transplantation to Those in Siblings Without Sickle Cell Disease and in Nontransplanted Individuals With Sickle Cell Disease: Design and Feasibility Study
Krishnamurti L, Arnold S, Haight A, Abraham A, Guilcher G, John T, Bakshi N, Shenoy S, Syrjala K, Martin P, Chaudhury S, Eames G, Olowoselu O, Hsieh M, De La Fuente J, Kasow K, Stenger E, Mertens A, El-Rassi F, Lane P, Shaw B, Meacham L, Archer D. Sickle Cell Transplantation Evaluation of Long-term and Late Effects Registry (STELLAR) to Compare Long-term Outcomes After Hematopoietic Cell Transplantation to Those in Siblings Without Sickle Cell Disease and in Nontransplanted Individuals With Sickle Cell Disease: Design and Feasibility Study. JMIR Research Protocols 2022, 11: e36780. PMID: 35793124, PMCID: PMC9301564, DOI: 10.2196/36780.Peer-Reviewed Original ResearchHematopoietic cell transplantationSickle cell diseaseINTERNATIONAL REGISTERED REPORT IDENTIFIERLong-term outcomesCell diseaseTransplantation evaluationCell transplantationLate effectsPost-HCT patientsYear post-HCTFeasibility of recruitmentHealth-related qualityMarrow Transplant ResearchElectronic pain diaryChronic graftNontransplanted individualsPost-HCTHost diseasePain diaryBlood pressureDaily painInternational BloodHandgrip testHip circumferenceSexual function
2020
Primary caregiver decision‐making in hematopoietic cell transplantation and gene therapy for sickle cell disease
Sinha C, Bakshi N, Ross D, Loewenstein G, Krishnamurti L. Primary caregiver decision‐making in hematopoietic cell transplantation and gene therapy for sickle cell disease. Pediatric Blood & Cancer 2020, 68: e28749-e28749. PMID: 33034129, PMCID: PMC8246626, DOI: 10.1002/pbc.28749.Peer-Reviewed Original ResearchConceptsHematopoietic cell transplantationSickle cell diseasePrimary caregiversSCD complicationsCell transplantationCell diseaseDiminished qualityAutologous hematopoietic progenitor cellsPrimary caregiver reportMajor medical decisionsGene therapyCurative optionSevere complicationsHematopoietic progenitor cellsClinical trialsAcceptable treatmentRecent complicationsComplicationsCaregiver reportsCaregiversProgenitor cellsNormal lifeTransplantationTherapyMedical decisions