Learn more about various research studies that are looking for participation from childhood cancer families. While some offer financial compensation for your participation, all of them are being done for the greater good and to help other families like yours!
Fear of Recurrence Therapy Parent Advisory Committee
Purpose: To guide the adaptation of the Fear of Recurrence Therapy intervention for parents.
Eligibility: Parents of childhood cancer survivors.
Compensation: $600 for six months of involvement.
Deadline: Express your interest by December 10, 2023.
Patient-reported Genetic testing Utility InDEx (P-GUIDE)
Purpose: To generate more robust evidence on patients’ perspectives on genetic testing to inform funding decisions and optimize genetic counselling strategies.
Eligibility: Parents of children with cancer who have received cancer-related genetic test results from a doctor or genetic counsellor in Canada in the past year and are comfortable communicating in English.
Compensation: $15 gift card
Advancing Patient-Centred Care in Young People Living with Chronic Pain
Purpose: To better understand what it like to live as a youth with chronic pain, and to create resources to share with health care teams to provide more youth-centred chronic pain care.
Eligibility: Canadian youth aged 13-21 who currently live with chronic pain.
Compensation: Gift card
Youth Who Live With Chronic Pain
Purpose: To learn about the peer support needs of youth living with chronic pain to help develop a peer support intervention for youth with chronic pain.
Eligibility: Aged 12-17, have chronic pain (>3 months), speak/understand/read English.
Compensation: $20 gift card
Worry About Cancer Recurrence Study
Purpose: To develop a questionnaire specifically for children and teens to measure worry about recurrence. We hope that this will help us to advance research in this area, and ultimately, improve long-term wellbeing for our survivors.
Eligibility: Diagnosed with cancer between 0-18 years of age; have completed active treatment; are currently 8-18 years of age; fluently speak and read English; currently live in Canada or the U.S.
Patient Engagement Strategy for Retinoblastoma Research
Purpose: To share research results with people affected by retinoblastoma (e.g., survivor, the immediate family of someone diagnosed with retinoblastoma etc.); to include a large diverse group or people affected by retinoblastoma in research; and to promote research that is created and led by people affected by retinoblastoma.
Impact of CHEO Active Website
Purpose: To contribute to the development of appropriate online resources that can assist children who need extra support to achieve a healthy, active lifestyle.
Eligibility: Parents of children aged 6+ who has a medical condition or disability.
Compensation: Having continued access to the site.
The Recover Study
Purpose: To increase awareness and develop programs to address the issues that YAs with cancer feel are most important.
Eligibility: People living in Canada who are over the age of 18 and were diagnosed with any type of cancer before the age of 40.
Compensation: $20 for each year you complete the survey.
The Beyond Study
Purpose: To transform childhood cancer care during & beyond the COVID-19 pandemic.
Eligibility: Canadian childhood cancer patient, survivor (aged 17 or younger), or parent/caregiver of a child with cancer.
Compensation: Amazon gift card
Neurosurgical Patient Perspectives on Evaluation of Residents in Competence by Design Education 2021
Purpose: To investigate patient and informal caregiver perspectives on resident doctor evaluations and to determine how best to incorporate patient evaluations and feedback into existing medical programs.
Eligibility: Either a neurosurgical patient or a family member, acting as an informal caregiver of a neurosurgical patient, who has had a minimum of one clinical encounter with a staff neurosurgeon, and are 18 years of age or older.
Make an Impact Study
Purpose: To understand why rare cancers occur and to accelerate the development of new therapies for these diseases.
Eligibility: View list of eligible cancers by clicking the "Learn More" button. Open internationally.
Compensation: FREE genetic sequencing available via Memorial Sloan Kettering Cancer Center for certain rare cancers.
Parental Coping with a Chronically Ill Child: A Closer Look into the Role of Religion
Purpose: To provide insight into how religion affects parents’ coping and how professionals working closely with chronically ill children and their families could provide emotional support and help families develop better coping strategies
Eligibility: Parents of chronically ill children
SickKids Teen Cancer Program Survey
Purpose: To examine the needs of teens and their health care providers in building a new program at SickKids that delivers age-appropriate care to teens with cancer.
Eligibility: Aged 13-19, SickKids patient, on or off treatment for any cancer diagnosis.
Compensation: Starbucks gift card
Sensitivity and Specificity: Identification of an Optimal Cognitive Screening Measure in Pediatric Oncology
Purpose: To compare different cognitive screening measures to help identity children/youth who need further assessment and resources.
Eligibility: Paediatric cancer survivors aged 8-16, who are at least one year after the end of treatment, and English speaking. A parent will be invited to participate in the study, and a teacher may optionally be invited to participate.
Needs of Retinoblastoma
Patients and Families
Purpose: To uncover the
psychosocial needs of patients with retinoblastoma and their families.
Eligibility: Retinoblastoma patient or survivor; or immediate caregiver of someone diagnosed with retinoblastoma;
aged 16 years or older;
received all or part of their care in Canada; and can read and understand English
My Child Has Cancer, Now What: How Parents Relay this Information to Their Child
Purpose: To examine how parents explain to the child his or her cancer diagnosis.
Eligibility: Parent of a child who was diagnosed with cancer at SickKids between 2014-2019.
Neuroblastoma Patient/Family Questionnaire
Purpose: To gather information from patients and families affected by pediatric neuroblastoma to help guide new research and therapeutic interventions.
Adolescent and Young Adult (AYA) Cancer Priority Setting Partnership (PSP)
Purpose: To create a list of research priorities for AYA cancer in Canada based on what patients, caregivers, and clinicians would like to see researched.
Eligibility: People who received a diagnosis of cancer as an AYA (aged 15-39), their caregivers (including bereaved caregivers), and clinicians who provide direct care to people diagnosed with cancer as an AYA.
Pain and Adolescent Loneliness Study
Purpose: To understand the types and impact of peer loneliness among adolescents with chronic pain within the context of the COVID-19 pandemic.
Eligibility: Canadian youth aged 12-18 who currently live with chronic pain (frequent or constant pain for 3+ months).
Complementary Health Approaches Use by Children and Adolescents with Cancer
Purpose: To understand patient and parent perspectives about complementary health approaches for children and adolescents with cancer.
Eligibility: You must be between 8 and 18 years of age, diagnosed with cancer, have used any of the products and practices of CHA (e.g., diet, taking supplements, doing yoga or massage), be able to speak and read English, and be willing to complete online surveys.
Compensation: Amazon gift card ($30 for individuals or $60 for parent/child pairs)
COVID-19 and Survivors of Childhood Cancer
Purpose: To see how childhood cancer survivors are faring during the pandemic with a view to hopefully tailoring support to address any needs more effectively.
Eligibility: Childhood cancer survivors who were diagnosed at least five years ago and/or off treatment for 2 years. It can be answered by survivors 15 years of age or older or by parents if under age 15.
Parents of Little Fighters
Purpose: The purpose of this study is to understand the individual and conjugal factors that contribute to the adaptation and the well-being of couples facing the cancer of their child, as well as the impact of illness on couple relationship.
Compensation: $60 per couple