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!
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.
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.
Cancer Experience Registry
Purpose: To support greater understanding of the needs of cancer survivors and those living with the diagnosis, raise awareness of the challenges of people affected by cancer, and develop programs and services that will address the needs and ultimately improve the long term quality of life of people impacted by cancer.
Complementary Health Approaches Use by Children and Adolescents with Cancer
Purpose: This study is being done to find out what are you and your parents thoughts on a questionnaire for children
and teens 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 (i.e. eating special foods, taking supplements, doing yoga or massage, etc.), be able to speak and read English, and be willing to complete online surveys.
Compensation: Participants will be given gift cards and certificates of community service after completing the survey.
Web-based Exercise Study for Children and Adolescents with Acute Lymphoblastic Leukemia
Purpose: To study the effect of a reward-based website on fitness and quality of life in children and adolescents who have completed chemotherapy for ALL.
Eligibility: Children aged 8-15 who have completed chemotherapy for ALL within the past 90 days, have access to a smart phone, and other criteria (see website for full list).
Compensation: Educational materials, an activity monitor and/or stickers, T-shirts and gift cards ($5 value).
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.
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.
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.