Understanding Children’s Experiences of Serious Illness
Make a meaningful impact and participate in a research study.
Investigators from the Canadian Institute of Health Research, University of Calgary, University of Alberta and Alberta Health Services are examining if a home-based, mobile health intervention can increase physical activity levels by 120 minutes per week among adolescents and young adult (AYA) cancer survivors. The findings will help us improve care and outcomes for AYA cancer survivors.
To learn more about the study and what’s involved, visit the study website at ayapact.com.
Seeking survivors of acute lymphoblastic leukemia (ALL)/solid tumors:
Treatment for childhood cancer can lead to serious medical conditions later in life. Appropriate follow-up care is critical for survivors of childhood cancer. Researchers at the University of Calgary would like to understand the barriers and enablers to receiving appropriate follow-up care for survivors of childhood cancer. This information will guide the development of a Canada-wide childhood cancer survivor patient platform.
We are asking eligible participants to complete an online questionnaire that will take about 15-20 minutes to complete. Participation in this study is completely voluntary and you may withdraw from the study at any time. We may also ask you to participate in a 1.5 to 2-hour focus group with other survivors of childhood cancer or healthcare providers.
Survivors are eligible to participate if:
Healthcare Providers (e.g., oncologists, general practitioners, advanced practice nurses) are eligible to participate if:
If you have any questions, please contact the research team at [email protected].
Please click here to learn if you are eligible for the study.
Dr. Fiona Schulte and her research team at the University of Calgary are seeking childhood cancer survivors to participate in small, virtual focus groups to share their experiences with worry about cancer returning. Participants will receive a $10 gift card.
Eligible participants must:
With all the uncertainty surrounding the COVID pandemic, it is important to understand how this is affecting the health and wellbeing of families affected by childhood cancer. University of Calgary researcher Dr. Fiona Schulte, PhD. R. Psych., has IRB approval for a study to explore the impact of COVID-19 on family distress and coping over the past seven months. The information will be used to help create specialized support, resources and guidance for cancer centres.
Eligible individuals will be asked to complete a 15-minute online questionnaire. Participation in the subject is voluntary and individuals can withdraw from the study at any time.
Dr. Schulte is interested in hearing from you:
Dr. Fiona Schulte is an assistant professor of psychosocial oncology in the Deparment of Oncology at the University of Calgary's Cumming School of Medicine.
There is a lot of uncertainty surrounding the COVID-19 pandemic. Researchers at the University of Calgary and Alberta Health Services would like to understand how the pandemic is affecting the health and wellbeing of childhood cancer survivors. This information will be used to help create specialized resources and support.
If you would like to participate please visit click here.
Researchers at Alberta Children’s Hospital are now enrolling individuals ages eight to 25 with a history of childhood cancer for an online research study. Questionnaires will ask survivors about their current health and well-being as well as their mood. Parents are also invited to participate. Findings from this study may help children with a history of cancer in the future.
Please contact the study team at [email protected] or 403 476 2676 if you are interested in hearing more!
Despite its reputed centrality to healthcare, compassion remains ill-defined, being conceptualized as an attitude, feeling, trait or state that arises in witnessing the suffering of another. Although compassion has been well conceptualized in the adult cancer population, its importance, meaning and impact in pediatric cancer (8-<18 years) populations has not been studied. This study is being done by the Compassion Research Lab, Faculty of Nursing, at the University of Calgary. The team is looking for the following participants to take part in a one-hour interview, either face-to-face or online through Skype:
All participats will receive a $20.00 gift card to either Starbucks, Toys R Us, and Chapter/Indigo.
If you and/or your child would like to participate in the study, please contact the Project Coordinator, Priya Jaggi at 403-220-7894 or [email protected]. The Principal Investigator for this study is Dr. Shane Sinclair.
This study is funded by the C17 Research Network and the Faculty of Nursing Bridge Funding.
This study has been approved by the Health Research Ethics Board of Alberta (HREBA.CC-18-0174), and has received administrative approval.
As more people survive cancer, the importance of research on effective interventions for improving quality of life amongst survivors is growing. Two interventions with a substantial evidence-base are Mindfulness-Based Cancer Recovery (MBCR) and Tai chi/Qigong (TCQ). However, these interventions have never been directly compared and they may help cancer patients in different ways.
MBCR focuses primarily on the challenges faced by people living with cancer. Different forms of meditation are introduced, beginning with a body scan and sensory awareness experience and progressing to sitting and walking meditations over the course of the program. Gentle Hatha yoga is incorporated throughout, as a form of moving meditation. Facilitator instruction, group discussion and reflection, problem solving, and skillful inquiry are also used.
Tai chi involves a series of slow specific movements or “forms” done in a meditative fashion to bring about a state of mental calm and clarity. Qigong exercises generally have three components: a posture (moving or stationary), breathing techniques, and mental focus on guiding chi/qi through the body. TCQ incorporates simple Tai Chi elements within a healing framework stemming from Qigong principles.
To learn more or sign up for the study, please visit The MATCH Study website.
The drug is called Carfilzomib and clinical health researchers at 10 major pediatric hospitals across North America are now evaluating it in a phase I clinical trial for difficult-to-treat children’s cancers.
Open to all eligible children with relapsed leukemia and solid tumours, the study will closely monitor and analyze the side effects of Carfilzomib to determine the maximum dose children can safely tolerate. The trial will cost approximately $3.5 million (U.S.) to administer.
Dr. Aru Narendran of the Alberta Children’s Hospital and University of Calgary and Dr. Jessica Boklan of Phoenix Children’s Hospital are the principal investigators in a new phase I clinical trial, studying the side effects of a drug called Carfizomib on children with high-risk cancers. Dr. Tony Truong, co-principal investigator at the Alberta Children’s Hospital, along with U of C clinical research staff, Karen Mazil and Pina Giuliano, are helping to monitor side effects and analyze findings from the study.
Previously tested and approved for use in adult patients, Carfilzomib has shown promise for treating adults with multiple myeloma—a high-risk leukemia. Studies in a University of Calgary lab revealed that the drug also acts on pediatric cancer cells. These findings from Dr. Aru Narendran’s lab were presented last year at a meeting of the American Association of Cancer Research.
Carfilzomib was originally synthesized from a natural substance made by a soil bacterium to protect itself. Scientists in Dr. Craig Crews’ lab at Yale University serendipitously discovered in 1998 that Carfilzomib also has strong anti-cancer properties. Their discovery led to clinical drug trials and FDA approval in 2012 for use in adults with multiple myeloma—a high-risk leukemia.
Carfilzomib’s anti-cancer properties lies in its ability to inhibit a mechanism called the proteasome, which cancer cells use for survival. Because cancer cells divide and multiply so quickly and recklessly, they make a lot of mistakes, leading to abnormally formed proteins within the cancer cells. These poorly formed molecules put stress on the cancer and threaten its survival. To get around this, the cancer cells increase their use of a mechanism called the proteasome to repair their mistakes. But by inhibiting proteasomes, Carfilzomib prevents the cancer cell from repairing itself and ultimately helps it to die of its own imperfections.
“The beauty of this drug is it goes after a mechanism used by all cancer cells, so it can be used against different cancers,” says Dr. Narendran a pediatric cancer researcher with the Experimental and Applied Therapeutics (ExpAT) program at the Alberta Children’s Hospital and the University of Calgary. “Normal cells don’t make so many mistakes, so this drug will be less toxic to normal cells, which may mean fewer side effects for children.”
Another promising attribute of Carfilzomib is that it works synergistically with other chemotherapies to boost their ability to kill cancer cells. This is especially important for chemo-resistant cancers.
“It’s kind of a safety net,” says Dr. Narendran. “Because the chemo agents and their toxicity are already known to us, we can use these chemotherapies with Carfilzomib to boost their potency for better outcomes.”
Although Carfilzomib looks promising, Dr. Narendran stresses that “What we know so far comes only from adult patients or from laboratory studies against pediatric cancer cells. We do not know if it will actually offer any benefit to pediatric cancer patients yet.”
As a phase I clinical trial, the study is not intended to cure children, but to understand its toxicities and determine suitable doses for treating children in the future.
Still, it is the first important step in a long quest to find safe and effective treatments for children with incurable cancers.
If it lives up to its potential, Carfilzomib may one day offer hope for children with incurable cancers.
If you are interested in this study for your child, please speak with your child’s oncologist to determine eligibility.