Transplant Research Newsletter – Winter 2016

ianWhen a parent is told, “Your child needs an organ transplant,” it is the last chance for survival. But modern medicine has made transplantation a viable treatment option with dramatic improvements in patient survival rates over the last several decades. This also means more children with complex medical diagnoses who used to face poor outcomes and often death are now able to live longer lives, increasing the need for transplants. In Canada, between 2004 – 2013, hundreds of children under the age of 18 received transplants including: 350 livers, 558 kidneys,
299 hearts and 42 lungs. More than 80% now survive into adolescence and young adulthood, however, not without challenges.

These age-specific issues unique to children and infants increase the complexity of transplantation, yet much of their medical care is based upon research conducted on adult patients. For example, extending allograft survival while minimizing the side effects of immunosuppression is a key challenge for all transplant patients, but this is even more important for children who may require multiple transplants over their lifetimes.

The success and side effects of transplantation in children can also vary greatly from the adult experience due to growth and development, and the severity of their end-stage diseases. For patients under 18, the 10-year survival rate for heart transplant is less than 60%, for lung it is 44% and liver is 77%.

In addition to issues of rejection, injury and immunosuppression, pediatric transplant recipients have to deal with transitioning into adolescence, which brings a unique set of medical, physical, emotional and psychosocial issues that impact not only their healthcare outcomes, but also their overall quality of life. A critical challenge for young transplant patients is adherence to medications to avoid organ rejection and failure.

This is why, with your support, the Transplant Research Foundation of BC is dedicated to encouraging research that specifically targets our youngest and most vulnerable patients. We are fortunate to have a robust team of scientists and clinicians working on the newest research in the field right here in our province. (See the next story on Dr. Tom Blydt-Hansen and his work on biomarkers to determine organ rejection.)

In 2013, the TRF established the Addison Pediatric Transplant Research Project with the sole purpose of raising money for pediatric research. (For more background on the Addison Project visit our website.) This year, we are excited to announce we have been able to leverage the funds for our first Pediatric Venture Grant into a national multi-centre research project through a partnership with the Canadian National Transplant Research Project (CNTRP) and the Alberta Transplant Institute (ATI). We are currently in discussions with other potential funding organizations and plan to announce full details in the coming weeks.

But our work doesn’t end there. We need your help to continue supporting research, because without research, advances in pediatric transplantation
can’t happen. These children are already living longer, better lives through discoveries made over the past three decades. Imagine what the next
thirty years could bring. Let’s not stop until we can transform transplantation from a viable treatment option to a cure.

community profile

It’s a typical Wednesday morning at BC Children’s Hospital forTom Dr. Tom Blydt-Hansen. He will be spending the next few hours going from seeing one young patient to another, all of them living with a transplanted kidney – just a few of the 140 transplant kids in BC who are regular visitors at the weekly Multi-Organ Transplant Clinic. As Director of the province’s only pediatric transplant program, Dr. Blydt- Hansen has gotten to know many of them.

Transplantation is one of the few miracles left in medicine. You take someone who is desperately ill and put a healthy, functioning organ into them. It’s a very special thing to be involved in.

The pediatric nephrologist is a clinician at heart. Prior to his recent move to Vancouver, he spent nearly a decade as the Section Head of Nephrology at the University of Manitoba in Winnipeg. But he also has an intense interest in research, fuelled by his daily interaction with patients. He says the biggest challenge for pediatric patients is the delicate balance of immune suppression – preventing rejection and preventing side effects. “We are always in this dichotomy of trying to control the immune system but not doing it so aggressively that we end up causing problems.”

As a clinician scientist with the Child and Family Research Institute (CFRI), housed at BC Children’s Hospital (BCCH ), and investigator with the Canadian National Transplant Research Program (CNTRP), Dr. Blydt-Hansen is currently involved in several multi-center studies. He believes research will hold the answers.

Research helps us to change the way we think about regulating the immune system as opposed to suppressing the immune system.

One of his main areas of study is related to biomarkers. Tests done with blood, urine or other body fluids can help diagnose and predict
organ failure and rejection, potentially lessening the need for stressful and invasive biopsies, and perhaps even allow doctors to tailor the
amount of medication to each specific patient. Dr. Blydt-Hansen is focusing on biomarkers in urine for pediatric kidney patients.

The other side of his research takes him right ight back to the bedside – examining quality of life and the psycho-social impact of transplantation on children.

If you think about it, every kid who has a transplant has nearly died. And that’s not lost on most of our kids.

He and Erika Penner, a psychologist at BC Children’s, are working to develop a mental health and quality of life screening process so their patients don’t develop psychiatric or mental health issues, or grow into traumatized adults. One of their common findings is that these children say they think a
lot about death.

But his work doesn’t end there. There is yet one more project for Dr. Blydt-Hansen, finding ways to get patients and their families involved in research. He wants to make sure their priorities are included too.

If we develop programs to treat support and monitor patients but don’t ask our families what they think then we will not have support from them. If they believe in our program they will advocate for it. This helps us and them.


New Transplant Research Funding!

Astellas logo Horizontal

An exciting new opportunity for BC transplant researchers! Astellas Pharma Canada is partnering with us for a brand new research grant – the Astellas/Transplant Research Foundation of BC Clinical Research Grant Program.

This program is committed to supporting patient focused, clinical and collaborative research that addresses barriers in the field of organ transplantation, contributing to improving patient care on a national scope.

Two $50,000 grants will be awarded this year. Letters of Intent are due February 15, 2016, with full applications due May 1, 2016.
More information can be found here.

Community Events

2016 Transplant Trot
April 10, 9:30 am.
For more information:

National Organ and Tissue Donor Awareness Week (NOTDAW )
April 18-24. Stay tuned for more information on the
events taking place that week.

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