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.

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Eligibility: Canadian youth aged 13-21 who currently live with chronic pain.

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Compensation: 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.

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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

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Eligibility: Parents of chronically ill children

Evaluating Psychosocial
Needs of Retinoblastoma
Patients and Families

Purpose: To uncover the
psychosocial needs of patients with retinoblastoma and their families.

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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.

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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.

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.

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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.

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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.

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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

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.

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Eligibility: Aged 12-17, have chronic pain (>3 months), speak/understand/read English.

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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.

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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.