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Background There is a paucity of data on the role of allogeneic hematopoietic cell transplantation (allo-HCT) in patients with angioimmunoblastic T-cell lymphoma (AITL). Using the CIBMTR registry, we report here the outcomes of AITL patients undergoing an allo-HCT. Methods We evaluated 249 adult AITL patients who received their first allo-HCT during 2000–2016. Results The median patient age was 56 years (range = 21–77). Majority of the patients were Caucasians (86%), with a male predominance (60%). Graft-versus-host disease (GVHD) prophylaxis was predominantly calcineurin inhibitor-based approaches while the most common graft source was peripheral blood (97%). Median follow-up of survivors was 49 months (range = 4–170 months). The cumulative incidence of grade 2–4 and grade 3–4 acute GVHD at day 180 were 36% (95% CI = 30–42) and 12 (95% CI = 8–17), respectively. The cumulative incidence of chronic GVHD at 1 year was 49% (95%CI 43–56). The 1-year non-relapse mortality (NRM) was 19% (95% CI = 14–24), while the 4-year relapse/progression, progression-free survival (PFS), and overall survival (OS) were 21% (95% CI = 16–27), 49% (95% CI = 42–56), and 56% (95% CI = 49–63), respectively. On multivariate analysis, chemoresistant status at the time of allo-HCT was associated with a significantly higher risk for therapy failure (inverse of PFS) (RR = 1.73 95% CI = 1.08–2.77), while KPS < 90% was associated with a significantly higher risk of mortality (inverse of OS) (RR = 3.46 95% CI = 1.75–6.87). Conclusion Our analysis shows that allo-HCT provides durable disease control even in AITL patients who failed a prior auto-HCT and in those subjects with refractory disease at the time of allografting.

Aims: Representation in national clinical and patient-reported outcome (PRO) registries is driven by clinical and sociocultural factors. While disparities in clinical outcomes data collection have been studied, less is known about the impact of community-level characteristics on PRO participation. The effect of social determinants, such as rurality and social vulnerability in representation in cellular therapy research, is unknown and needs to be explored more efficiently alongside community. This dissertation’s aim is twofold: to use data from a national registry to examine how social determinants are associated with representation in a subset of patients eligible for PRO data collection after hematopoietic cell transplantation (HCT) or cellular therapy (CT) and to elicit community-led strategies to mitigate disparities in representation.Methods: Data were analyzed from the Center for International Blood and Marrow Transplant Research (CIBMTR), which collects clinical and Patient-Reported Outcomes (PRO) data on HCT/CT recipients in the US. PRO data are collected only from a subset of participating centers. Two outcomes were assessed: agreement to be contacted for future research, a prerequisite for PRO participation, multivariable logistic regression, and submission of at least one PRO survey using a Fine-Gray Subdistribution Hazard Model to account for the competing risk of death without survey submission. Key covariates included race, ethnicity, age, sex, treatment type, functional status, rurality, and the Social Vulnerability Index (SVI). In tandem, strategies to mitigate disparities were elicited from stakeholders in the field, including patients, center representatives, clinicians, and social workers. Themes from a focus group and stakeholder interviews informed the strategies generated. Additionally, the qualitative research findings were disseminated to stakeholders in the field to gather feedback about the strategy actionability generated via a listening session.Results: Among 97,255 patients from 55 centers, 67.4% agreed to be contacted for future research. Race, ethnicity, age, sex, treatment type, functional status, rurality, and SVI were significantly associated with agreement. Patients from less vulnerable and rural areas had 38% and 8% higher odds of agreement, respectively. In contrast, Black, Hispanic, female, and lower functional status patients had 74%, 67%, 87%, and 95% lower odds of agreement, respectively. Of the 3,083 patients from centers participating in PRO collection, 27.6% submitted at least one survey. Race, ethnicity, age, treatment type, and functional status were associated with submission in the multivariable analysis; however, sex, rurality, and SVI were not. Hispanic, Black, and Native Hawaiian or Pacific Islander participants were about half as likely to submit at least one PRO.The qualitative analysis elicited strategies in six domains, including three prioritized as actionable: strengthening patient-clinician relationship, ensuring data transparency, building and restoring trust, and three deemed least actionable: addressing ethnoracial disparities, tailoring patient engagement, and effecting systems change.Conclusions: Community-level characteristics influence representation in a national clinical registry. While disparities exist in who agrees to be contacted for research, these differences diminish once patients are engaged. Stakeholders prioritize improving trust and communication between patients and researchers, and increasing the value of participation will improve representation. Increased value is proposed through increased clinical use of PROs, increased data ownership and transparency, tailored incentive types, and increased monetary amounts. Tailored engagement strategies may help improve equitable representation in PRO data collection.

Allogeneic hematopoietic cell transplantation (allo-HCT) is a curative therapy for relapsed/refractory and high-risk non-Hodgkin lymphoma (NHL). However, no large studies have evaluated allo-HCT utilization in elderly NHL patients (≥65 years). Using the CIBMTR registry, we report a time-trend analysis of 727 NHL patients (≥65 years) undergoing the first allo-HCT from 2000 to 2015 in the United States (US). Study cohorts were divided by time period: 2000–2005 (N = 76) vs. 2006–2010 (N = 238) vs. 2011–2015 (N = 413). Primary outcome was overall survival (OS). Secondary outcomes included progression-free survival (PFS), relapse/progression (R/P), and non-relapse mortality (NRM). Median age at transplant, use of reduced-intensity conditioning, and graft source remained stable, while use of unrelated donors increased in the most current era. The 1-year probabilities of NRM from 2000 to 2005 vs. 2006–2010 vs. 2011–2015 were 24% vs. 19% vs. 21%, respectively (p = 0.67). Four-year probability of R/P was similar among the three cohorts: 48% (2000–2005), 40% (2006–2010), and 40% (2011–2015) (p = 0.39). The 4-year probabilities of PFS and OS (2000–2005 vs. 2006–2010 vs. 2011–2015) showed significantly improved outcomes in more recent time periods: 17% vs. 31% vs. 30% (p = 0.02) and 21% vs. 42% vs. 44% (p < 0.001), respectively. Utilization of allo-HCT increased in elderly NHL patients in the US since 2000 with improving survival outcomes.

Allogeneic hematopoietic cell transplantation (allo-HCT) is a curative therapy for relapsed/refractory and high-risk non-Hodgkin lymphoma (NHL). However, no large studies have evaluated allo-HCT utilization in elderly NHL patients (≥65 years). Using the CIBMTR registry, we report a time-trend analysis of 727 NHL patients (≥65 years) undergoing the first allo-HCT from 2000 to 2015 in the United States (US). Study cohorts were divided by time period: 2000–2005 (N = 76) vs. 2006–2010 (N = 238) vs. 2011–2015 (N = 413). Primary outcome was overall survival (OS). Secondary outcomes included progression-free survival (PFS), relapse/progression (R/P), and non-relapse mortality (NRM). Median age at transplant, use of reduced-intensity conditioning, and graft source remained stable, while use of unrelated donors increased in the most current era. The 1-year probabilities of NRM from 2000 to 2005 vs. 2006–2010 vs. 2011–2015 were 24% vs. 19% vs. 21%, respectively (p = 0.67). Four-year probability of R/P was similar among the three cohorts: 48% (2000–2005), 40% (2006–2010), and 40% (2011–2015) (p = 0.39). The 4-year probabilities of PFS and OS (2000–2005 vs. 2006–2010 vs. 2011–2015) showed significantly improved outcomes in more recent time periods: 17% vs. 31% vs. 30% (p = 0.02) and 21% vs. 42% vs. 44% (p < 0.001), respectively. Utilization of allo-HCT increased in elderly NHL patients in the US since 2000 with improving survival outcomes.