Issues Faced by a Resource-Constrained Stem Cell Donor Registry and Impact of Coronavirus Disease 2019 on Their Functioning

Abstract

Background: Allogeneic hematopoietic stem cell transplantation activity is growing globally as one of the curative treatment options for many hematological diseases. A stem cell transplant registry plays an important role in such treatment. Setting up a functional stem cell donor registry is quite challenging with several issues such as resources, donor recruitment, donor attrition, ethnicity, lack of support, and impact of coronavirus disease 2019 (COVID-19). Aim: The aim of the current study was to present the experience of a resource-constrained registry in India as well as the effect of COVID-19 on its operations. Settings and Design: The present study was a descriptive study which was designed to study the functioning of a resource-constrained registry from north India. Materials and Methods: The study data for the period of 2012–2020 pertaining to donor recruitment, number of searches, number of matched donors, number of transplants performed, and donor attrition was collected from the registry software “Prometheus.” Statistical Analysis: Descriptive statistics such as frequency and percentage was used. Results: During the past 9 years of operation, the registry has faced several issues pertaining to lack of funds, donor recruitment, donor attrition, and COVID-19 has exacerbated their pain points significantly. The registry has recruited a total of 20,093 donors, of which only 7794 have been human leukocyte antigen typed, with the remaining samples awaiting funding. Out of this small number of typed donors, registry has performed 15 matched unrelated donor transplants for Indian and international patients. As a result of COVID-19, donor attrition was on the rise and showed a peak in 2020. During the year 2020, the number of searches, donor recruitment camps, and donors all decreased considerably. Conclusion: The establishment and operation of a stem cell transplant registry necessitate extensive planning and resources. The resource-constrained registries face a number of issues pertaining to effective functioning and future developments. The external support and awareness for the cause can help minimize the pain points of these registries.