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N-PhenoGENICS

Participation FAQs

1. What is the purpose of this study?

The goal of this study is to closely examine the long-term impact of chemotherapy on brain development in leukemia survivors, and also to study how genes are involved in chemotherapy-related impairments.

2. Who are being studied?

We are inviting leukemia survivors between the ages of 8 and 18 years old, who have been in remission for at least two (2) years.

3. What is expected of study participants?

Participants will be asked to go into the MRI scanner so that the research team can make a brain scan. We will also ask you to fill in a questionnaire about yourself.

Please Note: The MRI scanner can be described as an extremely strong magnet. Orthodontic braces create weird artifacts on the brain images, which is why you cannot participate in the study if you have braces (note that wires are OK). Also, for safety purposes, you should not participate if you have any metal in your body (e.g., metal prosthesis). Do not hesitate to contact us if you have any questions.

4. How much time will this take?

Participants will be in the scanner for about 30 minutes, and completing psychological testing as well as completing questions.Together with some prep time, the study will take about three hours of your time.

5. Are there any benefits to participating?

You may not get anything out this study, but we hope that we can benefit future leukemia patients by designing better treatment protocols based on their genetic make-up. You will receive compensation in recognition of your time and efforts, as well as a picture of your brain. You will also be reimbursed for reasonable out-of-pocket expenses.

6. Am I eligible to participate in this study?

You may be eligible to participate if you…
 

  • were diagnosed with Acute Lymphoblastic Leukemia when you were between the ages of one (1) and ten years old
  • were treated with chemotherapy only (no cranial radiation)
  • are currently between eight (8) – 18 years old
  • have been off  ALL treatment for at least  two (2)  years
  • do not have metal in your body such as metal prosthesis
  • do not have orthodontic braces (wires are OK)

Don’t hesitate to contact us if you think you may be eligible, but still have some questions.

7. What will happen to the information that you provide?

The records related to this study will be kept private, and specific identifying information (i.e., participant’s name, date of birth, etc.) will only be accessible to the Principal Investigator and the research team involved with the study.  In any sort of report the researchers might publish, information that will make it possible to identify participants will not be included. Your information will be coded using a unique ID number and stored in a secure/locked location. Only researchers and members of the Research Ethics Board will have access to this data.

8. Who are the members of the research team conducting this study?

Drs. Ellen van der Plas and Russell Schachar. For more details, visit the Team Bios section.
 

9. How can I get further information?

You can contact:

Laura Hopfi
Clinical Research Project Coordinator/ Psychometrist
Phone: (416) 813-8285
Email: laura.hopf@sickkids.ca

Paatrick Te
Clinical Research Project Assistant
Phone: (416) 813-7654, ext: 201828
Email: patrick.te@sickkids.ca

10. Is there any risk to my family by participating?

The N-PhenoGENICS study takes every measure to ensure that families will be safe and that no harm will come to those who participate. Before participants engage in the study related activities, they will be provided with informed consents. These documents will be discussed in detail, including an overview of any benefits and risks involved in participating in the study. The research staff will ensure that participants understand everything in the informed consents and will be happy to answer any questions you may have about study.