ATOB

Acknowledgment

In the accomplishment of this project, many stakeholders have bestowed upon us their blessings and the heart pledged support. We, at this time, thank all the people who have been concerned with this project.

Primarily, we thank the Almighty God for thus far he has brought us in this project. We then acknowledge the grant support from the Government of Uganda through Makerere University Research and Innovation fund (MakRIF) under the able leadership of the grants management committee whose valuable guidance has helped us complete this project successfully.

We would also like to thank the Makerere University Hospital, Kawempe National Referral Hospital and Neogenesis Fertility Centre for opening their doors to us for this project through offering training, working space and staff to support in project implementation.

Last, we acknowledge all participants that availed us with their time, information and human biological specimens. We are grateful!

Key words

Cryopreservation Cryopreservation is a process that preserves organelles, cells, tissues, or any other biological constructs by cooling the samples to very low temperatures
ATOB Advancing Tissue and Organ Biobanking
IBRH3AU Integrated Biorepository of H3Africa in Uganda
SOPs Standard Operating Procedures
UCB Umbilical Cord Blood
MakRIF Makerere University Research and Innovation Fund

Background

Despite the existence of biobanking in the developed countries for decades, most African countries are far yet to embrace human tissue and organ biobanking technology. Uganda is in a similar situation despite the huge economic burden on overseas medical treatment (over $150 million per year) spent by Ugandans in obtaining these services abroad, and yet the majority cannot afford. Patients with hematologic conditions (sickle cell disease, leukemia, and lymphoma) in need of transplants would benefit from stored umbilical cord blood which is an alternative source of hematopoietic stem cells for bone marrow reconstitution. Liver failure from chronic hepatitis B and end-stage kidney failure and couples battling infertility are common and would benefit immensely from organ and tissue biobanking.

Following the establishment of a successful biorepository, the Integrated Biorepository of H3Africa (IBRH3AU), URL (https://www.ibru.mak.ac.ug/), the team set out to widen the scope and introduce tissue and organ biobanking at Makerere University, to provide a service, advance training and research in this field.

Executive summary

Background: Many ailments that were once incurable such as infertility, sickle cell anemia, leukemia, kidney and liver failure have been addressed through national tissue or organ donation programs. These ailments are common in Uganda and contribute significantly to the disease burden. Organ transplant has become routine in developed countries. However, in sub–Saharan Africa, only a few can access such care abroad at exorbitant costs both to the individual and the country.

Uganda is in the process of initiating tissue and organ transplant to serve the ever growing need to reduce mortality and morbidity. Government has invested in this field through sponsoring overseas training for specialists who will be tasked with performing these procedures. Furthermore, Cabinet approved the “Uganda Human Organ Donation and Tissue Transplant Bill 2020” which will set the regulatory framework for this discipline. The National Referral hospital currently under renovation, will be equipped with facilities for organ and tissue transplantation upon completion.

The Gap: Given the current preparations for organ and tissue transplantation in Uganda, one of the neglected areas is the capacity to have quality assured biobanks that collect, store, retrieve and distribute viable tissues and organs for clinical care in a well-regulated and standardized manner.

Methods: The Integrated Biorepository of H3Africa in Uganda (IBRH3AU), pioneered biobanking in Uganda through establishing the first well annotated, quality assured biorepository for nucleic acids, blood and its derivatives with over 400,000 samples in storage over the last 10 years. Based on this success, IBRH3AU set out to pioneer and expand the scope to include human tissue and organ biobanking, starting with sperm and umbilical cord blood (including its derivatives i.e. stem cells and plasma). Furthermore, to encourage tissue and organ donation among the general public, attitudes and perceptions of the community towards tissue and organ biobanking were explored through key informant interviews of selected stakeholders.

Results: 1) Training of staff in tissue collection and cryopreservation for human use was successfully conducted; 2) Standard operating procedures (SOPs) were developed and staff trained on these procedures; 3) Subsequently, healthy donors for sperm and umbilical cord blood were successfully recruited and their tissues stored for future use; 4) Developed a Tissue and Biospecimen catalogue showcasing well characterized tissues (sperm and stem cells) and other biospecimen, accessible to the wider scientific community and potential recipients; 5) Constituted an advisory board to oversee organ and tissue biobanking; 6) Conducted a study on the knowledge, attitudes and perceptions on tissue and organ biobanking from key stakeholders including government, healthcare practitioners and community leaders.

All these efforts are aimed at laying a foundation for human tissue and organ transplantation in Uganda. As a leading academic and research institution, Makerere University has pioneered human tissue and organ biobanking in Uganda, through establishing capacity for collection, processing, storage, and retrieval of human tissue and organs. The University will embark on training graduate students and other researchers to promote and improve human tissue and organ transplantation in the country.

General Objective

To establish a tissue and organ biobank at Makerere University to serve as a catalyst for research in organ collection, biobanking, and transplantation in Uganda.

Specific Objectives

  1. To train personnel and develop standard operating procedures for collection, processing, and storage of human ova, sperm, and umbilical cord blood.
  2. To collect, process, and store human ova, sperms, and umbilical cord blood.
  3. To develop a publicly accessible catalog of HLA typed viable human tissue and organs.
  4. To explore the ethical, legal, and societal issues (ELSI) in human tissue and organ biobanking.

Methods

  1. Develop Standard Operating procedures and guidelines for tissue and organ biobanking in Uganda. We developed these tools in consultation with the Ministry of Health and the Uganda National Council of Science and Technology (UNCST).
  2. Improve the existing infrastructure to include human tissue and organ biobanking. We expanded the existing infrastructure to collect, process, and store tissue (semen, ova, and umbilical cord blood) within our biorepository processes. We believe this will spur research in human tissue and organ biobanking, including immunogenetics, laying ground for whole organ biobanking and thus availing viable tissue for organ transplantation.
  3. Developed a publicly accessible tissue catalog of HLA-typed viable human tissue and organs. The catalog showcases the available human tissue and organs informing potential beneficiaries and health caregivers of the availability of stored sperm, ova, and umbilical cord blood that can be used as part of the treatment regimen.
  4. To study the Ethical, Legal and Social factors surrounding human tissue and organ biobanking in Uganda. Through this we have been able enable us to evaluate and understand the knowledge, attitudes, and perceptions of Ugandans towards human tissue and organ biobanking

ATOB Dissemination Gallery