In honor of Black History Month (February 2021), I would like to highlight some research done that has an impact on the field racial/ethnic disparities in transplantation, and take the opportunity to highlight the need for progress in this area.

Unfortunately, ethnic/racial disparities span across all organ systems. From kidney to heart to liver to lung, there are past and current manuscripts highlighting these disparities. Reasons for these disparities are speculated to be multifactorial and include genetic, immunologic, and socioeconomic factors. Most of these manuscripts highlight the unfair disadvantages that plague minorities such as worse access to transplant or even worse, higher morbidity and/or mortality.

But one recent paper might be changing this trend. Lamour et al. published a paper in The Journal of Heart and Lung Transplantation entitled “Early outcomes for low-risk pediatric heart transplant recipients and steroid avoidance: A multicenter cohort study (CTOTC-04)’. This paper presented the first favorable outcome in non-white patients. This paper was a summary of the early results of a multicenter, prospective, cohort study assessing the impact of a steroid-free maintenance immunosuppression protocol and routine surveillance biopsies on outcomes in low risk children (no pretransplant donor specific antibodies)1. They found that non-black children were 3 times more likely to develop acute rejection in the first-year post transplant when compared to the non-white cohort (odds ratio, 3.18; 95% confidence interval, 1.24–8.17; p = 0.004).

Historic studies have showed that black race was a risk factor for repeat rejection, late rejection, and hemodynamically significant rejection. One study by Singh et al. showed comparable rejection episodes among racial groups, but this is the first report of less episodes2. While this is only study, it was a large study that included 8 centers and 240 transplants. The authors acknowledge that this report only goes out to one year and further work needs to be done in this field and they plan to report their findings past the first year when available. This suggests that current immunosuppression protocols might be able to overcome the immune and genetic differences known to exist in the black population, but only time will tell as more data is published. We hope that this trend in improved outcomes continues.

References

1. Jacqueline M. Lamour, Kristen L. Mason, Daphne T. Hsu, Brian Feingold, Elizabeth D. Blume, Charles E. Canter, Anne I. Dipchand, Robert E. Shaddy, William T. Mahle, Warren A. Zuckerman, Carol Bentlejewski, Brian D. Armstrong, Yvonne Morrison, Helena Diop, David N. Iklé, Jonah Odim, Adriana Zeevi, Steven A. Webber, for the CTOTC-04 investigators. Early outcomes for low-risk pediatric heart transplant recipients and steroid avoidance: A multicenter cohort study (Clinical Trials in Organ Transplantation in Children - CTOTC-04),The Journal of Heart and Lung Transplantation, Volume 38, Issue 9, 2019, Pages 972-981
2. 2. TP Singh, DC Naftel, L Addonizio, et al. Association of race and socioeconomic position with outcomes in pediatric heart transplant recipients. Am J Transplant, 10 (2010), pp. 2116-2123

The Publications Committee has achieved many goals between the years 2019 and 2021 and we would like to share a summary of our main activities during these two years. Despite the difficulties encountered due to the COVID-19 pandemic, we tried to adapt ourselves to this unusual year 2020 and to the incoming year 2021. The committee continues to meet quarterly by zoom. The purpose of this committee is to assure that important topics related to the transplantation of children are brought to the attention of the transplant community, and provide appropriate publication tools. Thus, their members have been working not only on committee-driven writing projects, but also assisting the editors of Pediatric Transplantation in finding appropriate topics for the Journal. In addition, the committee wants to assist younger IPTA members in developing their writing skills and scientific output through individual mentorship.

In 2019 in Vancouver, the idea of a Peer Mentoring Program with a writing workshop was developed to strengthen these efforts. The aim of the program is to facilitate access for young doctors from different disciplines to publish their research projects appropriately. This concept was further developed and a concept developed that has four levels of increasing commitment and responsibility between mentor and mentee. In addition, physicians are offered help in the writing of abstracts for the 2022 IPTA Congress. The program is promoted via the newsletter and on the IPTA website.

Please click on the link below for more information.

PUBLICATIONS COMMITTEE

The committee is also in charge of the quarterly member newsletter and has outlined all upcoming newsletters within the next two years. We have named chaperones so that each newsletter will be prepared by different members of the society to have a fresh focus for each issue.

A new IPTA member benefit has been posted on the IPTA homepage including a compilation of guidelines and consensus and position statements with relevance to pediatric solid organ transplantation. Definitions including content and methodological requirements for guidelines and statement manuscripts have also been collected. Members have free online access to the full text of the publication. This program is coordinated and supervised by Burkhard Toenshoff. Last, but not least, the Publications Committee currently works on an IPTA endorsement policy to clarify the procedure of endorsement of manuscripts and publications important for pediatric transplant patients. The Publications Committee should be contacted early in the process of conceptualization of a writing project to make endorsement by IPTA as easy as possible.

These are the main tasks. We hope to meet everyone face to face in Prague in March 2022, without having to ask if we see each other and / or hear each other well.

The IPTA Outreach Committee continues to support emerging centres of transplantation in less developed areas through an annual competitive grant programme. The programme provides funds for site visits between a nominated supporting centre and an emerging centre. COVID-19 travel restrictions have proved an additional challenge but have not stopped our activities. The successful programme for 2020 University College Hospital Ibadan, Nigeria supported by Alberta Children’s Hospital, Calgary is to be congratulated for having set up a ‘virtual site visit’. They have shown us that with dedication and commitment, remote teleconferencing can be used effectively for education and program planning. None of this would be possible without the hard work of the program leads Debo Ademola (Ibadan) Julian Midgley (Calgary) and Incoming Chair Raymond Reding.

The Committee would like to welcome our new members:

• Priya Pais, Bangalore, India
• Maria Amalia Matamoros, San Jose, Costa Rica
• Yaron Avitzur, Toronto, Canada
• Helen Currier, Houston, USA
• Mara Medeiro, Mexico City, Mexico

We indeed have diverse global representation with multiorgan, allied, medical and surgical expertise. 2021 will see a new incoming Chair for the Committee, Raymond Reding, liver transplant surgeon, Belgium. Raymond has had extensive experience in assisting with development of liver transplantation in Vietnam and we welcome the wealth of experience he will bring to the role.

Anne I. Dipchand, MD is Professor of Paediatrics at the University of Toronto and a Paediatric Cardiologist and the head of the Heart Transplant Program at the Hospital for Sick Children (SickKids) in Toronto. Her clinical research activities are focused on paediatric heart failure and transplantation.

Dr. Dipchand is the Past-President of the International Paediatric Transplant Association (IPTA), and has been involved in multiple leadership positions in other organizations including the American Society of Transplantation, the International Heart and Lung Transplantation Society, the American Heart Association, the Canadian Cardiac Transplant Network, the Canadian Society of Transplantation, amongst others.

Dr. Dipchand is actively involved in clinical research. She is a co-PI for an NIH-funded consortium looking at alloantibodies in paediatric heart transplantation. She has had a major focus on registry-based analyses, having been the President of the Pediatric Heart Transplant Society (PHTS) and the Associate Director – Paediatrics for the International Society of Heart and Lung Transplantation (ISHLT) Registry - the two major international registries for pediatric heart transplantation. She was the Chair of the International Pediatric Heart Failure Registry (iPHFR) and sat on the Executive Committee of the ISHLT Registry for Mechanically Assisted Circulatory Support (IMACS).

Dr. Dipchand was the Founding President and CEO of the Pediatric Heart Transplant Society Foundation, a not-for-profit foundation dedicated to advancing the science and treatment of children with end-stage heart failure listed for or following a heart transplant. She also actively spearheads opportunities for children and families of children with organ transplantation including educational symposia and written educational materials.

Fun Fact: Dr. Dipchand is a terrible swimmer. She failed pre-beginners 3 times and has never taken another swimming lesson since! She advises that if you have kids, make sure they learn how to swim!

Post-transplant lymphoproliferative disorders (PTLDs) are a major and feared complication of organ and cell transplantation. PTLDs transcend multiple disciplines and demand a team approach to improve knowledge and treatment. Children in particular are more susceptible to PTLDs due to lack of prior exposure and immunity to the oncogenic Epstein-Barr virus, a key pathogenic driver. The 2nd edition of ‘Post-Transplant Lymphoproliferative Disorders’ is designed to be a comprehensive reference guide that will be of great value to oncologists and all transplant professionals (surgeons, nephrologists, cardiologists, hepatologists/gastroenterologists, pulmonologists, infectious disease specialists, hematopathologists), as well as interns and residents training in these specialisms. This book will provide these professionals with comprehensive and up-to-date information that will guide their management of transplant patients before and after transplant, with and without PTLD.

The first edition of this book was published in 2009. With the significant influx of new knowledge in the field over the intervening time, a 2nd edition was indicated. For this 2nd edition the three original editors welcome Dr. Ralf Trappe as an editor. Dr. Trappe was the lead investigator on some of the most important PTLD trials conducted in the last 10 years, including the PTLD-1 trial and its offshoots. In the 2nd edition, the team has added a completely new section on PTLDs after hematopoietic stem cell transplantation. Many new authors covering a wider range of countries across the world have contributed their expertise.

Many of these authors are current IPTA members. Lead editor Dr. Steve Webber and contributing author Dr. Anne Dipchand are past IPTA Presidents, and contributing author Dr. Carlos Esquivel is the current IPTA President-Elect. Co-editors Dr. Vikas Dharnidharka (current chair of the IPTA Communications Committee) and Dr. Michael Green (Past-Chair of the IPTA ID CARE Committee) are also IPTA members. The highly experienced internationally recognized team of 34 authors have updated every section, plus added many new chapters, including on genetic abnormalities in virus and host seen in PTLDs. The newest PTLD classifications and current treatment paradigms that reflect recently conducted international trials are fully incorporated. As technologies have advanced, the authors provide state-of the-art new diagnostic and prognostic information.

Visit www.ipta2022.org for more details

The IPTA Allied Health and Nursing (AHN) professional committee recently distributed a survey to international AHN colleagues practicing in the field of pediatric organ transplantation. The aim of the survey was to describe a framework of professional practice from a global perspective and identify ongoing barriers to care provision, including new challenges experienced during the COVID-19 pandemic. The survey was disseminated via e-blasts and the IPTA newsletter for 3 months beginning September 2020. It was open to any allied health or nursing professional working in the field of pediatric transplantation – both IPTA members and non-members. Responses were managed through the REDCap electronic data base.

The survey was completed by 119 nursing and allied health professionals from around the world. While most respondents were from North America, there was also participation from the United Kingdom, Europe, Australia, New Zealand, South Africa, Central and South America. Over fourteen different professional designations were represented including nursing professionals, pharmacists, dieticians, transplant coordinators, physician assistants, psychologists, physiotherapists, occupational therapists, social workers and creative art therapists. Respondents worked in transplant centres that provided both surgical and long-term follow-up for children pre- and post-solid organ transplantation.

Participants provided details regarding various components of their role, including clinical work, research and teaching. They also spoke specifically about the unique facets of their role that support many aspects of the transplant patients' journey leading to improved health outcomes and quality of life. More probing questions were also asked regarding possible barriers to providing optimal care and other areas of activity they would like to be involved in. In addition, participants also answered questions on how the COVID-19 pandemic had impacted clinical practice providing both positive (e.g., telehealth allowing for more equitable and accessible service provision, improved work-life balance, improved infection control) and negative (e.g.professional isolation, limited service provision, and barriers to accessing telehealth services) consequences. Opportunities for longer term practice changes were also reviewed. We are hopeful that by better understanding the varying professional practices of our colleagues, we will be able to understand the extremely valuable role that Allied Health and Nursing play in improving pediatric transplant outcomes. This will enable us to tailor our ongoing educational endeavors to be of greater relevance, and hopefully encourage growth in our Allied Health and Nursing IPTA membership. We are currently collating the data, and hope to disseminate these findings at the IPTA meeting in Prague in March 2022, alongside preparing a manuscript for submission to the Journal of Pediatric Transplantation. Watch this space for more details on this exciting project!

Additionally, the Allied Health and Nursing (AHN) professional committee has hosted two webinars in the last year. Our inaugural webinar was entitled “Social Media Use in Pediatric Transplantation” and was presented by Sheri Madigan, PhD, R.Psych and Macey Henderson, JD, PhD. This session focused on the potential benefits and consequences of digital media in the lives of children as well as transplant related issues, specifically incorporating applications of social media into transplantation and donation.

Our second webinar was a session on “Tricks and Tips for Virtual Care in Pediatric Transplant” with a panel of 5 professionals from a variety of disciplines including, Julie Guillen, Certified Child Life Specialist, Lisa Remaley, Physician Assistant, Robin Deliva, Physiotherapist, and Anna Galloway & Rosa Reed-Berendt both representing Clinical Psychology. This webinar focused on adaptations made by various members of our transplant allied health and nursing professional community during the COVID-19 pandemic whose practice has traditionally relied upon in-person assessment and intervention.

Recordings for both can be found by clicking on the bar below.

Click here

We will be partnering with the Allied Health and Nursing members from the Pediatric Heart Transplant Study (PHTS) for our next webinar in April 2021.

Stay tuned!

IHTLVI Survey in Pediatric Transplant Recipients under 18 years of age: Invitation to participate

The ID Committee would like to invite interested participants to get involved in this survey by contacting Dr Luciola Vasquez.
Please reach out to Dr Luciola Vasquez by clicking here :

Please find the Best in Year Review from 2019 below. These will be posted on the Home page of the PETR. The Best in Year 2020 will be available later this year.

Sent on behalf of PETR
Sharon Bartosh, M.D, Aurora Children’s Health, Madison, WI, USA
Burkhard Toenshoff, University of Heidelberg, Germany.

Please find the Best in Year Review from 2019 by clicking on the bar below.

Join us for IPTA Virtual Journal Club! The Education Committee and Publications Committee of IPTA have collaborated to bring you a journal club-style discussion of the recent work of Dr. Anna Gold, Bianca Bondi, and their colleagues in Toronto, looking at early school-age cognitive performance after pediatric heart transplantation. This paper was published in Pediatric Transplantation in December of 2020.

Presenters:

• Anna Gold, PhD
  C. Psych Transplant and Regenerative Medicine Centre SickKids Hospital Toronto, Canada
  
  
• Bianca Bondi, MA, PhD Candidate
  York University, Toronto, Canada