Donor Registry Research Articles

Reconsidering Public Attitudes Toward Deceased Organ Donation Registration.

Background: The aim of the current study is to understand Americans' attitudes toward deceased organ donation and to assess their level of acceptance on positions toward organ donation. Methods: In summer and winter of 2023, 2 national samples completed measures of attitudes toward donation, reported their registration status, rated positions related to donation, and provided demographic information. Results: Data from 2 samples indicated registration estimates between 50% and 57% and a significant proportion of those unregistered reported reluctance to register. The believability of national registry estimates and ratings of acceptability of 9 organ donation positions differed by registration status. Conclusion: Mass media and motor vehicles interventions seeking to increase registration rates should take into consideration individual attitudes and support toward donation may not be as strong as once thought.

Organ donation messages and psychological reactance: examining preemptive and postscript mitigation strategies coupled with restoration scripts

ABSTRACT This study compared the effectiveness of script location (preemptive or postscript) and restoration mitigation (restorative or non-restorative) for reducing psychological reactance and increasing message reactions and behavioral intentions versus a control message. Undergraduates (N = 415) completed an online survey experiment promoting signing the organ donor registry. Unexpectedly, no differences were found among the 5 message conditions for threats to freedom, anger, or behavioral intentions. Significant differences were found for all 4 experimental conditions versus the control condition for negative cognitions. Significant differences were found only between the restorative postscript condition and the non-restorative preemptive condition for message reactions.

Barriers in Body Donations for Anatomy Teaching: Lessons Learned From Students and Donors.

Introduction Cadaveric dissection has remained the mainstay of anatomy teaching. However, there is an acute shortage of cadavers for teaching undergraduate students, postgraduates, and specialists, and to supplement the gap, voluntary body donation is gaining momentum. The present study aims to explore the barriers to body donations for anatomical dissection. Methods A descriptivestudy was undertaken among medical students and registered voluntary body donors at a medical college in the Upper Assam region of IndiafromJanuary 2024 to March 2024. Results The majority of the first-year MBBS medical students (129 out of 161; 80.1%) were found to benot willing to donate their bodies foranatomical dissection. There was no statistically significant difference in the age, gender, and religion of the participants. The primary reasons for students' reluctance to donate were emotional attachments to themselves, their family members, their religion, and their preferences on social customs for the disposal of the dead. Among the registered voluntary body donors,the most common source of informationfor the body donation programwasan awareness program conducted by NGOs involved in the promotion of body donation.Altruism was the most common motivation for getting registered for body donation. Provision of cadavers for research and training was themost common reason for registration for donation, whereas lack of information was the most common barrier. All the participants wanted due respect for the donated bodies from the doctors, students, and staff during handling. Conclusion The mere possession ofknowledge regarding body donation does not increase participationin the actual process. Personal beliefs, repeated motivations by voluntary organizations and registered donors, proper utilization of the bodies, and setting examples in ethical handling of the donated bodies in the dissection hall may greatly improve the body donation program.

Multiple measures for self-identification improve matching donors with patients in unrelated hematopoietic stem cell transplant

BackgroundQuestions persist around whether and how to use race or geographic ancestry in biomedical research and medicine, but these forms of self-identification serve as a critical tool to inform matching algorithms for human leukocyte antigen (HLA) of varying levels of resolution for unrelated hematopoietic stem cell transplant in large donor registries.MethodsHere, we examined multiple self-reported measures of race and ancestry from a survey of a cohort of over 100,000 U.S. volunteer bone marrow donors alongside their high-resolution HLA genotype data.ResultsWe find that these self-report measures are often non-overlapping, and that no single self-reported measure alone provides a better fit to HLA genetic ancestry than a combination including both race and geographic ancestry. We also found that patterns of reporting for race and ancestry appear to be influenced by participation in direct-to-consumer genetic ancestry testing.ConclusionsWhile these data are not used directly in matching for transplant, our results demonstrate that there is a place for the language of both race and geographic ancestry in the critical process of facilitating accurate prediction of HLA in the donor registry context.

Analysis of Attitudes Towards Opt-Out Organ Donation Consent: A Cross-Sectional Study Among Saudi Arabian Residents

ObjectiveThe study aims to investigate public opinion on opt-out organ donation registration in Saudi Arabia, addressing a gap identified in existing research that reveals varied attitudes and intentions among the population, as indicated by studies in Qatar and Saudi Arabia. MethodsThis study employed a secondary analysis approach, utilizing data from a cross-sectional survey conducted online among 1397 residents of Saudi Arabia. The survey utilized a GoogleTM form questionnaire adapted from a previous study in Qatar. The questionnaire comprised three sections, gathering socio-demographic information, assessing general awareness about organ donation, and exploring participants' agreement with opt-out consent and beliefs related to organ donation using the Theory of Planned Behaviour (TPB) model. ResultsAmong the participants, 44.4% supported opt-out consent, with 25.7% females and 39.1% Saudi citizens. Females and diploma/graduation-level education were significantly associated with opt-out support (p<0.001, p=0.012, respectively). 98.06% of opt-out supporters were familiar with organ donation. 93.05% agreed to promote organ donation, 98.38% believed registration saves lives, and 81.91% were willing if family had no objections. 86.75% were ready with more information, and 85.78% if informed about their religion's perspective. 92.25% believed living and posthumous donation positively impact life after death. Concerns included inadequate care (33.44%) and bodily disfigurement (28.43%) postmortem. Majority felt healthy (45.56%) and appropriate in age for donation (57.67%). Among opt-out supporters, 20.84% expressed interest, 8.4% conveyed disinterest, while 36.34% remained undecided regarding organ donation registration. ConclusionThe study reveals a considerable openness among Saudis toward adopting an opt-out organ donation system, suggesting a potential avenue for increased organ donation rates. While acknowledging cultural nuances, particularly familial influences, targeted interventions are vital to overcome specific barriers and ensure the successful implementation of an opt-out policy.

How doctors can lead the way in their communities: Co-creation, the Indian community and organ donation registration.

Transplant success rates can increase when organs and tissues are matched within ethnic communities, but how well are the processes around organ donation understood by discrete ethnic communities in Australia? We investigated this in relation to one ethnic group, the Australian-Indian community in Sydney. A culturally appropriate survey and dissemination strategy was co-created with Indian community members through an Advisory Panel. Items were informed by a thematic analysis of cultural beliefs shared through the advisory panel discussions and measured awareness and practices associated with organ donation and transplantation and beliefs about organ donation and registration. Donation information was provided at the end. Two hundred and thirty-eight participants completed the survey. Hinduism along with Tamil and Gujarati were the most frequently identified religious and cultural backgrounds. The processes around organ donation were not well known, and Australian Organ Donor Register registration rates were below the national average. Principal component analysis revealed positive, social, medical trust, concerns, and cardiac and brain death belief factors. Doctors played a key role in generating trust in the donation system, decisions about organ donation were embedded in family and community, and family discussion was related to increased registration. Registered participants reported higher scores on medical trust beliefs, which also predicted family discussion. The information needed to understand the process of organ donation and registration in Australia is not embedded in this community, highlighting the need forprogrammes to be tailored to each culturally diverse community rather than culturally diverse communites in general. Doctors and the advisory panels are pivotal in this process.

Trends of coinfections among healthy blood donors: COVID-19 pandemic repercussion

ABSTRACT Background: Human immunodeficiency virus (HIV), hepatitis B virus (HBV), and hepatitis C virus (HCV) coinfection has emerged as a leading cause of morbidity throughout the world in the last two decades. The coronavirus disease 2019 (COVID-19) pandemic has escalated the disease burden further by increasing the number of intravenous (IV) drug abusers and unemployment. Aim: The present study was done to analyse the impact of COVID-19 on seroprevalence as well as trends during pre, post and pandemic years of coinfection and mono-infections in the Malwa region of Punjab. Setting and Design: This descriptive cross-sectional study was done in the department of immunohematology and blood transfusion at a tertiary care hospital. Materials and Methods: The data on transfusion-transmitted infections (TTIs) was collected for a period of four years from 2019 to 2022, that is, pre, post and during the pandemic period. All the blood samples were screened for viral markers, HIV I and II, HCV, and hepatitis B surface antigen (HBsAg) using the enzyme-linked immunosorbent assay (ELISA) technique. Malarial antigen and syphilis infection testing was done using a rapid diagnostic card test. The total number of sero-reactive cases and their distribution were noted. Results: A total of 58,953 donors were screened and included during the study period. Each blood donor was identified by a donor registration number. The overall TTI seroprevalence in blood donors was 2.83% (n = 1670). The seroprevalence of TTIs in blood donors showed an increasing trend for HIV, HCV, and HBsAg in 2019–2021, whereas there was a decrease in reactivity status in the 2022 (back to pre-pandemic year). There was a significant increase in the coinfection rate from 0.1% to 0.25%. Conclusion: The COVID-19 pandemic impact on the coinfection rate of TTI was significant. To curb these TTIs and coinfections, education and public awareness are the key factors. India is a developing country, so transfusion medicine specialists need to work day and night to practice safe blood services.

Ethics of Organ Donation and Transplantation: Toward Self-Sufficiency.

Organ donation, intersecting medical necessity and ethical responsibility, calls for policies respecting individual autonomy while aiming for societal selfsufficiency. This article evaluates various government policies, emphasizing the ethical use of nudges in decision-making and the potential impact on autonomy. We argue that, while some policies might be coercive, others may inadvertently disrespect autonomy through subtle influences on decisionmaking. To reach self sufficiency in organ donation and transplantation and to keep adherent to medical ethics, especially informed consent, and gift of life campaigns, governments must determine the legal procedures by which their residents are registered, or can register, as organ donors. Provided that governments recognize that people have a right to determine what happens to their organs after they die, there are 4 feasible options to choose from: optin, opt-out, mandated active choice, and voluntary active choice. This article investigated the ethics of these policies' use of nudges and pokes to affect organ donor registration ways, rules, and rates. We argue that the use of nudges in this context is morally problematic. It is disrespectful of people's autonomy to take advantage of their cognitive biases since doing so involves bypassing, not engaging, their rational capacities. We conclude that, although mandated active choice policies are not problem free, they are coercive; after all, voluntary active choice, opt-in, and opt-out policies are potentially less respectful of people's autonomy since their use of nudges could significantly affect people's decision making.

Distribution of ABO and D antigen expression in Yogyakarta, Java Island: a pioneer large-scale study in Indonesia

ObjectiveHere, we sought to report ABO and D antigen distribution in blood donors from Yogyakarta, Java Island, Indonesia. Phenotype data (ABO/D) from donors who donated blood between January 1, 2018, and December 31, 2023, at the Yogyakarta Blood Donor Unit were extracted from the blood donor registry, and phenotype frequency was calculated subsequently.ResultsIn the 245,307 blood donors collected over six years, ABO phenotype frequency: O (frequency: 38.5%) > B (29.4%) > A (24.1%) > AB (8.0%). The D-positive phenotype was far more common (99.5%) than the D-negative phenotype (0.5%). The phenotypic pattern globally is similar to previous reports in Southeast Asia. The D antigen distribution is similar to world distribution as the most common blood group. For the first time in Indonesia, this distribution of ABO and D phenotype is reported in a large-scale study. This work is a pioneer in the coordinated optimization of transfusion guidelines at the national level.

Racial Equity in Family Approach for Patients Medically Suitable for Deceased Organ Donation.

To conduct a contemporary analysis of the association between family approach of medically suitable potential organ donors and race/ethnicity. Retrospective review of data collected prospectively by Organ Procurement Organizations (OPOs). Ten OPOs representing eight regions of the Organ Procurement and Transplantation Network and 26% of all deceased donor organs recovered in the United States. All hospitalized patients on mechanical ventilation and referred to OPOs as potential donors from January 1, 2018, to December 31, 2022. None. OPOs provided data on referral year, race, sex, donor registration status, screening determination, donation medical suitability, donation type (brain death, circulatory death), and family approach. We evaluated factors associated with family approach to discuss donation using descriptive statistics and multivariable logistic models. Of 255,429 total cases, 138,622 (54%) were screened-in for further evaluation, with variation by race/ethnicity (50% White, 60% Black, 69% Hispanic, and 60% Asian). Among those screened-in, 31,253 (23%) were medically suitable for donation, with modest variation by race/ethnicity (22% White, 26% Black, 23% Hispanic, and 21% Asian). Family approach rate by OPOs of medically suitable cases was 94% (n = 29,315), which did not vary by race/ethnicity (94% White, 93% Black, 95% Hispanic, and 95% Asian). Family approach by OPOs was lower for circulatory death (95%) vs. brain death (97%) cases but showed minimal differences in approach rate based on race/ethnicity between medically suitable patients with different death pathways. In contrast, donor registration status of medically suitable potential donors was highly variable by race/ethnicity (37% overall; 45% White, 21% Black, 29% Hispanic, and 25% Asian). Multivariable models indicated no significant difference of family approach between White and Black (odds ratio [OR], 1.09; 95% CI, 0.95-1.24) or Asian (OR, 1.23; 95% CI, 0.95-1.60) patients. Findings indicate racial equity in OPO family approach rates among patients who were medically suitable for organ donation.

Cryopreservation of hematopoietic cells from unrelated donors from the Czech National Bone Marrow Donor Registry in the context of COVID-19 pandemic – are there useless collections?

Cryopreservation of hematopoietic cells from unrelated donors from the Czech National Bone Marrow Donor Registry in the context of COVID-19 pandemic – are there useless collections?

HLA-A, -B, -C and -DRB1 Association with Autism Spectrum Disorder Risk: A Sex-Related Analysis in Italian ASD Children and Their Siblings.

Autism Spectrum disorders (ASD) are diagnosed more often in males than in females, by a ratio of about 3:1; this is likely to be due to a difference in risk burden between the sexes and/or to "compensatory skills" in females, that may delay the diagnosis of ASD. Identifying specific risk factors for ASD in females may be important in facilitating early diagnosis. We investigated whether HLA- class I: -A, -B, -C and class II -DRB1 alleles, which have been suggested to play a role in the development of ASD, can be considered as sex-related risk/protective markers towards the ASD. We performed HLA allele genotyping in 178 Italian children with ASD, 94 healthy siblings, and their parents. HLA allele distribution was compared between children with ASD, sex-matched healthy siblings, and a cohort of healthy controls (HC) enrolled in the Italian bone marrow donor registry. Allele transmission from parents to children with ASD and their siblings was also assessed. Our findings suggest that HLA-A*02, B*38, and C*12 alleles are more frequently carried by females with ASD compared to both HC and healthy female siblings, indicating these alleles as potential risk factors for ASD in females. Conversely, the HLA-A*03 allele was more commonly transmitted to healthy female siblings, suggesting it might have a protective effect. Additionally, the HLA-B*44 allele was found to be more prevalent in boys with ASD, indicating it is a potential risk factor for male patients. This is the first Italian study of sex-related HLA association with ASD. If confirmed, these results could facilitate early ASD diagnosis in female patients, allowing earlier interventions, which are crucial in the management of neurodevelopmental disorders.

P.362: Television dramas as catalysts for organ donation registration: A retrospective analysis during the pandemic era.

P.362: Television dramas as catalysts for organ donation registration: A retrospective analysis during the pandemic era.

Knowledge, Attitudes, and Beliefs Toward Organ Donation Registration Among Asian Americans: Development and Pilot-testing of Educational Intervention Video.

Organ donation registration rates in the United States are lowest among Asian Americans. This study aimed to investigate the reasons for low organ donation registration rates among Asian Americans and develop educational material to help improve organ donation rates and awareness. We conducted a 2-phase study. In phase 1, a cross-sectional observational survey was distributed in-person on an iPad to members of the Asian community in Queens, New York, to investigate their knowledge, attitudes, and beliefs toward organ donation. Based on the results, an educational video was developed, and the efficacy of the video was assessed with an independent cohort of participants in phase 2 using a pre-/post-video comprehension assessment survey. Among 514 Chinese or Korean Americans who participated in the phase 1 survey, 97 participants (19%) reported being registered organ donors. Registered donors were more likely to have previously discussed their organ donation wishes with their family (adjusted odds ratio [aOR], 4.77; 95% confidence interval [CI], 2.56-8.85; P < 0.01), knowledge of the different registration methods (aOR, 2.57; 95% CI, 1.24-5.31; P < 0.01), or know a registered organ donor (aOR, 2.62; 95% CI, 1.39-4.95; P < 0.01). For the educational video efficacy assessment given pre-/post-video, the majority (90%) of the respondents reported learning something new from the video. After watching the video, there was a significant improvement in the mean knowledge score regarding organ donation (63% versus 92%; P < 0.01) and an increase in intention to have discussion regarding organ donation with family. We found varies factors associated with low organ donation registration rates among Asian Americans and demonstrated the potential of our educational video to impart organ donation knowledge to viewers and instigate the intention to have family discussions regarding organ donation. Further research is needed to assess the impact of videos in motivating actual organ donation registration.

Understanding factors limiting hematopoietic cell transplantation for acute myeloid leukemia patients in Mexico: a comprehensive analysis.

Acute myeloid leukemia (AML) is the most frequent indication for allogeneic hematopoietic cell transplantation (alloHCT) worldwide; social and health system barriers limit its access. We performed an observational retrospective analysis in Mexico to analyze factors limiting alloHCT in fit patients with AML. With a median follow-up of 11.8 months, 301 patients were included, with a median age of 42; 33.5% were classified as adverse risk. Despite 215 patients (92.5%) achieving complete remission, only 103 (34%) had HLA-typing: 44.5% had a matched-sibling donor (MSD), 32% a haploidentical donor, and 23.5% had no donor. Only 23.5% of patients had an HCT consult; merely 36 underwent an HCT: 30 alloHCT, and six an autologous HCT. Age ≥ 60 years, HCT-CI score ≥ three, and the absence of a local transplant program negatively influenced HLA typing likelihood. Patients with an MSD had a higher alloHCT likelihood. The cumulative incidence of transplant (CIT) and relapse (CIR) at 6 and 12 months was 7.3% and 13.8%, 8.2% and 13%, respectively. A lack of HLA-typing was associated with a lower CIT (p < 0.001) and higher CIR (p = 0.033) (HR 11.72, CI 95% 4.39-31.27, p < 0.001), while the presence of an MSD was associated with a higher CIT (p = 0.002) (HR 4.22, CI 95% 1.89-9.44, p < 0.001). The main reasons hindering alloHCT are the lack of access to HLA-typing tests and the absence of an MSD. A national donor registry and improved HLA-typing accessibility are critical for increasing alloHCT access in Mexico.

Knowledge and willingness to donate kidney for transplantation among general population in Saudi Arabia

IntroductionKidney transplantation is the preferred treatment for end-stage renal disease (ESRD), offering a superior quality of life and extended survival compared to other renal replacement therapies. As the number of ESRD patients grows, so does the demand for organ transplants. The prevalence of ESRD is anticipated to escalate further due to the rising rates of diabetes mellitus (DM), hypertension (HTN), and obesity. Organ donation, particularly from living donors, remains the main source of transplants in the region, despite the notable underutilization of potential deceased donors’ organs. The objective of this research is to assess the level of knowledge, attitudes, and willingness to donate kidneys among the general population, a pivotal step in addressing the organ shortage crisis.MethodsThis cross-sectional study was conducted in the Aseer region of Saudi Arabia using a previously validated questionnaire. The questionnaire collected demographic data and insights into general attitudes, knowledge, and beliefs about organ donation. Logistic regression was used to identify predictors of knowledge and willingness to donate.ResultsThe study involved 705 participants, predominantly young adults with a high level of education. Awareness of kidney donation was high, and knowledge about donation was broad, especially regarding religious permissibility and awareness of the donor registry. However, only 25% expressed willingness to donate their kidneys, and a 4% were already registered as donors. Furthermore, higher educational level was not associated with higher odds of knowledge or willingness to donate.ConclusionDespite the considerable awareness, actual donor registration rates were low, highlighting the necessity for targeted educational interventions and a deeper understanding of the cultural and socioeconomic barriers that exist.

Allogeneic hematopoietic cell transplantation from alternative donors in acute myeloid leukemia.

Allogeneic hematopoietic cell transplantation (HCT) potentially provides a cure for patients with acute myeloid leukemia (AML) who are unlikely to be cured with chemotherapy alone. Previously, human leukocyte antigen (HLA)-matched related donors were used exclusively, which made the procedure available for a limited proportion of patients. The introduction of high-resolution HLA-typing technology, innovations in immunosuppressive therapy, and improved supportive care measures have significantly changed the situation. Now, patients without a matched related donor have an ample opportunity to receive allogeneic HCT with the use of matched or mismatched unrelated donors, umbilical cord blood grafts, or haploidentical related donors. The outcomes of alternative donor transplantations have improved over the past decades, and the growth of unrelated donor registries as well as the donor diversification have enhanced the chance of finding a suitable donor. With multiple alternative donor choices available for most patients, the donor selection is becoming increasingly important. To discuss the optimal donor choice in case of unavailability of an HLA-matched related donor, this article reviews the existing literature of retrospective and prospective comparisons of different alternative donor transplantations in AML and discusses the current state-of-art modalities in allogeneic HCT using alternative donors.

High Resolution HLA-A, HLA-B, and HLA-C Allele Frequencies in Romanian Hematopoietic Stem Cell Donors.

The HLA genes are associated with various autoimmune pathologies, with the control of the immune response also being significant in organs and cells transplantation. The aim of the study is to identify the HLA-A, HLA-B, and HLA-C alleles frequencies in the analyzed Romanian cohort. We performed HLA typing using next-generation sequencing (NGS) in a Romanian cohort to estimate class I HLA allele frequencies up to a six-digit resolution. A total of 420 voluntary donors from the National Registry of Voluntary Hematopoietic Stem Cell Donors (RNDVCSH) were included in the study for HLA genotyping. Peripheral blood samples were taken and brought to the Fundeni Clinical Institute during 2020-2021. HLA genotyping was performed using the Immucor Mia Fora NGS MFlex kit. A total of 109 different alleles were detected in 420 analyzed samples, out of which 31 were for HLA-A, 49 for HLA-B, and 29 for HLA-C. The most frequent HLA-A alleles were HLA-A*02:01:01 (26.11%), HLA-A*01:01:01 (12.5%), HLA-A*24:02:01 (11.67%), HLA-A*03:01:01 (9.72%), HLA-A*11:01:01, and HLA-A*32:01:01 (each with 8.6%). For the HLA-B locus, the most frequent allele was HLA-B*18:01:01 (11.25%), followed by HLA-B*51:01:01 (10.83%) and HLA-B*08:01:01 (7.78%). The most common HLA-C alleles were HLA-C*07:01:01 (17.36%), HLA-C*04:01:01 (13.47%), and HLA-C*12:03:01 (10.69%). Follow-up studies are ongoing for confirming the detected results.

Diversity of Body Donations and Willed Donor Applications in a Newly Established Medical Faculty in Sri Lanka

Objective: Body donations to the medical faculties in Sri Lanka play a critical role in medical education and research. The success of body donation programs depends on the diversity of donors. Assessing donor diversity is crucial to meeting the educational needs of students and researchers. Thus, the aim of this study was to examine the demographic profiles and diversity of donors and willed donors registered at a newly established Faculty of Medicine (FOM), Wayamba University of Sri Lanka (WUSL) located in Kuliyapitiya, Northwestern Province (NWP).Methods: A retrospective analysis of the body donation registry and willed donor applications received to the Department of Anatomy, FOM, WUSL from the year 2019 to 2024 was conducted.Results: A total of 35 adult body donations, one foetal body donation, and 183 complete willed donor applications were received. The highest number of body donations (38.88%, n=14) and willed donor applications (n=117,63.93%) have been received in the year 2023. Based on this study, the typical donor was likely to be a 52-year-old, Sinhalese male lived in NWP. The typical willing donor was likely to be a Sinhalese, female living in the NWP.Conclusion: Although a good number of body donations and applications have been received, a lack of ethnic diversity in the donations was observed despite the population-based ethnic diversity of the country and the NWP.

Unrelated hematopoietic stem cell donor registries: present reality and future prospects.

Stem cell donor registries play an important role in providing stem cell products from unrelated donors to patients with severe blood diseases. In this review, important aspects of donor registry work, current challenges and possible future developments are discussed. The current growth in global unrelated stem cell donations is in line with the long-term trend, indicating that donor registries have overcome the COVID-19 pandemic. A key challenge for donor registries is the recruitment of donors from disadvantaged populations to create greater equity in access to unrelated stem cell transplantation. In addition, recruiting young donors and increasing the availability of donors who are already registered are important goals. In recent years, numerous studies have looked at the context of these themes and the development of possible solutions. The international community of donor registries, together with the World Marrow Donor Association, has helped many patients in need of a stem cell transplant over the past decades and is, therefore, a bright example of international collaboration for a good cause. It is currently addressing a number of challenges to effectively help as many patients as possible from various populations also in the future.