SATiBA Newsletter Vol 2, Quarter 1 : 2019

SATiBA Newsletter Volume 02 - April 2019

The 2019 Congress and AGM have been combined and will be co-hosted by SATiBA and SATS (Southern African Transplantation Society). Registration is open! If you haven't already registered, then don't waste another minute.

The 2019 Conference 2019 to be held at the beautiful Krystal Beach hotel in Gordons Bay, Western Cape serves to provide SATiBA members with a unique opportunity to work closely with our peers in the organ transplantation field. By pooling resources and ideas we hope to bring you a Conference which will challenge your thinking and simultaneously provide encouragement for future work through the sharing of knowledge. A pre-congress workshop in collaboration with the International Society of Organ Donation and Procurement (ISODP) will be held on the 5th and 6th of September, with a strong focus on strategies that will ultimately improve organ and tissue donation within the South African context.

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On the first day of the Congress (Friday), all delegates will sit together in plenary session around organ and tissue donation and procurement and ethics. The Saturday will be dedicated to the SATiBA/SATS parallel session, and SATiBA will end its participation that evening, whilst SATS continue with their activities on Sunday.

SATiBA has been approached by the Global Alliance of Eye Bank Associations (GAEBA) to participate in a long term data collection project, and we request the assistance of all Eye Banks to ensure a meaningful exercise.
The Global Alliance of Eye Bank Associations (GAEBA) announced a long-term project to capture annual data on corneal transplants, corneal donations and tissue movement across countries – with other data sets potentially set to follow.

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“Right now, we do not have access to global rates regarding corneal transplantation, donation or utility,” says GAEBA Representative, Dr Graeme Pollock. “This means the sector, its members, end-users (surgeons and researchers) and the wider eye care community, is unable to develop effective strategies to plan for the long-term need of human tissues for transplant, training and research, nor do they have adequate data to commence conversations with legislative and governing bodies or build new partnerships with those outside of the sector.”
“The new project is designed to provide annual de-identified data at a national level. We will not be identifying the eye banks, surgeons or hospitals, and nor will we be analysing the outcomes, we will simply present the raw de-identified data for those seeking such information.”

“Our approach has been inspired by the WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation, the IAPB Vision Atlas, and the work of Gain et al (2015). We hope to complement those activities long term,” says Pollock.

About the Project

Annual calendar year data will be collected and made publicly available.
The data will be published at the country-level only. All provider details will be withheld to shield the identity of the company/organisation, eye banker, surgeon or hospital-transplant facilities, or other partners.
The system will commence with collecting 2019 data. This will be collected in the first half of the following year.
Surgeons and hospital-transplant facilities that import tissue because they do not have an eye bank serving them from within their country will be connected individually and encouraged to develop a national tally system for submission. GAEBA will be available to assist the development of national tally systems.

South African Eye banks are requested to submit their data to SATiBA, and the association will de-identify and submit data to GAEBA annually on their behalf. SATiBA will also be working with the Ophthalmic Society in an effort to collect data around the number of imported corneas utilised in transplant procedures taking place country-wide. It is intended that this process remain simple and hassle-free. Details of the reporting method will be communicated in due course.
Learn more at http://www.gaeba.org/

South African Bone Marrow Registry (SABMR) - Dr Charlotte Ingram & Colleagues

Being awarded the 2018 World Marrow Donor Day - WMDD Grand Prize is a fulfilment of our wildest dream come true. This is a reflection of the great SABMR team and our partners.
Thanks to all for your support!
Congratulations to SABMR, who won the Grand Prize at the "Oscars of registry" the World Marrow Donor Day - WMDD, held in Noordwijk in the Netherlands! This year marked the 25th Anniversary of the WMDA - the founders of World Bone Marrow Donor Day.

"What an honour!" - By Catriona Ross, publicity writer for the South African Bone Marrow Registry

'What an honour!' Sibongile Jimlongo, 25, a candidate attorney from Stellenbosch, shares her recent experience of donating bone-marrow stem cells.

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A bone-marrow donation is a rewarding act for those who undertake it. Whereas most tissue bank and organ donations are made posthumously, bone-marrow donation involves a live, healthy donor – a committed somebody who must undergo a series of blood tests to discover if they are indeed a match for the recipient, and then spend a few hours, sometimes on two consecutive days, donating cells for a patient who would otherwise face certain death.
Sibo Jimlongo has been a regular blood donor since 2013. In 2017, a bone marrow recruiter approached her while she was donating blood on campus at UWC: 'She explained what bone marrow donation was all about, that a stem cell match needed to be like somebody's clone, and that ethnicity plays a big part. Would I consider it?' Sibo signed up. (Donors can now also register by means of a simple buccal-swab test too, available at various locations nationwide. Just click ‘Donate’ at www.sabmr.co.za)
To her surprise, a few months later she was phoned by the South African Bone Marrow Registry (SABMR) to inform her that she might be a match for a patient. After a slew of tests, another call came: she was indeed a perfect match.
Why would she subject herself to the inconvenience and possible pain, a few people she knew wondered. 'There's a bigger picture,' she says. It's not about you; it's about the next person. You're saving a life so someone else can do the things they envision.' She saw her impending donation as a great opportunity to educate others.
Sibo's donation was scheduled before her exams, in 2018. For four days prior to this, she had Neupogen injections (which she chose to administer herself) to stimulate her bones to produce extra stem cells. On the morning of the donation, she and two friends drove to Netcare Kuilsriver Hospital, where the process was overseen by hospital staff, a SABMR staff member and a social worker. 'It took about six hours. One of my friends was as fascinated by the process as I was; we've watched a lot of Grey's Anatomy!' Sibo laughs. From a tube into her femoral vein, her blood was sent into a machine where the stem cells were separated out; the rest of her blood was returned to her.
'Afterwards, I was quite emotional, thinking how the bag of stem cells would now go to whoever needed it.' Within three days the small incision from the intravenous line had healed. 'Everything was back to normal. I had no side effects. It really was quite an experience,' she says.
All Sibo knows of her recipient is that the patient is a South African child. 'It meant a lot to me that I was saving a little person's life,' she says. The donation was especially poignant for Siba's family, who had lost her great aunt to leukaemia shortly before her donation. 'I think it's one of the greatest things I've ever done. It's one of the best acts of humanity,' she says. 'If I'm healthy, and in a position to grant the opportunity to live life fully to someone else, what an honour!'
About the SABMR
Founded in 1991 at Groote Schuur Hospital in Cape Town, the SABMR is a non-profit organisation accredited with the World Marrow Donor Association. To date, the SABMR has facilitated stem-cell transplants for close to 500 patients locally and provided stem cells to 27 patients internationally.
Family members, especially siblings, are generally most suitable as bone-marrow donors, but because today's average family is small, only 30% of patients will have a compatible sibling. For the other 70%, the SABMR steps in to search for a donor. The chance of finding a compatible bone marrow donor is around one in 100,000. With 73,000 donors registered locally, the SABMR is linked to 74 international registries and cord blood banks, which collectively have a database of over 32 million donors.
Becoming a donor
Any healthy person between 18 and 45 may register as a bone-marrow donor. See www.sabmr.co.za, call (021) 447-8638 or email donors@sabmr.co.za.

SATiBA will be hosting the 2020 World Union of Tissue Bank Associations Congress right here in South Africa in the latter part of next year!

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As a requirement from WUTBA and in preparation for the Congress, SATiBA is required to compile a list of tissue banking activities (including blood banking, bone marrow and gametes) being carried out throughout the rest of Africa. In addition, SATiBA is required to investigate the possibilities for continent-wide collaboration.
To enable SATiBA to present the world meeting with reliable information, SATiBA has successfully secured the necessary NRF funding to employ a postgraduate student for a 12-month period to research the topic. In addition, the successful candidate will compile an inventory of all tissue banking activities within South Africa, so as to reflect a complete picture. Not only will this potentially increase our membership, but it has the potential for further collaboration opportunities.

Although all tissue bank associations will be invited to participate in the 2020 Congress, the focus will be on the African continent. We would like to extend a warm invitation to all SATiBA members to become involved with this exciting development and support it where possible. If you have any contribution to make in terms of the event itself, specifically preparation or funding, then please get in contact with us at info@satiba.org.za.

Cerebral Palsy (CP) is the most common cause of physical disability in children, and currently, there is no cure1. The global prevalence of CP is between 0.2 and 0.3 per cent with a marked difference between developed and developing countries. South African studies indicate a high prevalence rate for CP, between 1% and 8%.2
Umbilical cord blood (UCB) cell therapy for the treatment of children with Cerebral Palsy is currently being assessed in a number of clinical trials as umbilical cord blood stem cells have been shown to improve motor function and brain connectivity.

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Summary of Cerebral Palsy Cord Blood Clinical Trials currently recruiting (Parents Guide to Cord Blood Foundation: https://parentsguidecordblood.org/en/trials/cerebral-palsy)3

In a randomized, double-blind, placebo-controlled, phase two clinical trial at Duke University, 63 children (between ages 1-6) with varied types and severities of spastic cerebral palsy, received a single intravenous dose of between 10-50 million stem cells per kilogram of their body weight to ascertain whether autologous cord blood (ACB) could improve function (Clinicaltrials.gov, NCT01147653).4,6
The improvements were greater than those typically observed for children of similar age and condition and exceeded the gains made by children who received a lower dose of cells or placebo.6 The improvements for the children who received doses of at least 25 million cells per kilogram of body weight progressed beyond their expected increases when they were tested a year after infusion.5
Therefore results of the study suggest that appropriately dosed ACB infusion improves brain connectivity and gross motor function in young children with CP.4
Joanne Kurtzberg is now conducting a sibling allogeneic clinical trial at Duke University- there are 90 children between ages 2-5 years.
The researchers are hopeful that cord blood and cell therapy may have a role in treating children with cerebral palsy and brain injury and from the results of these studies, are encouraged to continue this promising research.6

Clinical Trials Using Umbilical Cord Blood for Cerebral Palsy: Next Biosciences

Update from Netcells Parents
In June 2016, we released our 2nd cord blood unit for transplant and are very encouraged to have recently received positive feedback from the parents regarding the infusion.

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The cord blood unit that was released was for a little 3-year old boy who was diagnosed with Cerebral Palsy (CP) and was accepted onto a clinical trial at Duke University in the States.
Upon the diagnosis, the family explored a number of different treatment options and having banked their son’s umbilical cord blood at birth as a form of medical insurance, looked into whether cord blood was being used for any neurological disorders.
They were encouraged to come across a number of clinical trials taking place whereby autologous cord blood was being used to improve function in children with CP.
The family investigated a number of clinical trials and applied for acceptance into a few of them. Fortunately, their son met the requirements/acceptance criteria for the clinical trial taking place at Duke University, North Carolina, USA. The actual trial programme had finished recruiting but they were happy to conduct the transfusion privately.
Upon acceptance, all the necessary arrangements were made for the family to travel to the States and the cord blood unit banked at Netcells was shipped to the USA in a special cryogenic shipper.
The family could not believe the amount of support they received every step of the way and described the team at Duke to be extremely passionate about the work they do- they said Dr Kurtzberg and the nurses where somewhat ‘angelical’.
During the infusion of the cord blood, the child has to be awake but the parents mentioned that the environment at Duke is extremely calming- they have a therapy singer that plays beautiful children’s songs throughout the infusion and the little boy still remembers the happy memory.
Prior to the infusion, the little boy was not fully walking, “he could walk unassisted, but he had bad days and good days, some days he needed a hand to move around, some others he would just crawl, others he could walk, so it was very unstable… right after the procedure, we went to Mexico to visit my family and for the first time, he just walked down two small steps with such ease! It was the first thing we saw since then we haven’t stopped seeing improvements… it’s not like a miraculous thing that you just see in front of your eyes, but if you stopped and remember how he was 2 years ago, you wouldn’t just believe he is so independent now.”
The family have seen incredible improvements since the infusion and believe that his progress is stable- they have also continued with a number of additional therapies such as MAES therapy, swimming, OT, Physio, Botox, equinotherapy etc.
Duke University has recently launched a sibling cord blood clinical trial for CP and they are hoping they will be accepted into the programme and can use the sisters stem cells to do another transplant.

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