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N-PhenoGENICS

Participation FAQs

1. What is the purpose of this study?

The purpose of this study is to identify potential therapeutic targets for prevention of chemotherapy-induced Neuro-Cognitive and Behavioural late effects in childhood leukemia survivors. The researchers aim to look at the child’s genes and environment, such as nutrition, in the development of side effects of leukemia treatment related to brain function. This study provides a unique opportunity for investigating genetic and environmental risk factors for brain side effects from drugs, so that strategies to prevent these side effects may be possible.

2. Who are being studied?

Our goal is to see 500 participants over the period of five years that have had a past diagnosis of Acute Lymphoblastic Leukemia (ALL) and are between the ages of eight (8) to 20 years old.

3. What is expected of study participants?

Families enrolled in the N-PhenoGENICS study will be asked to complete a one-day only examination, that will be comprised of a neuropsychological assessment, questionnaires related to the child’s nutrition and behaviours, followed by sample collection for genetic and nutritional analyses.

4. How much time will this take?

For successful study participation, families will complete a one-day examination, from approximately 8:30 a.m. to 3:30 p.m. at The Hospital for Sick Children (SickKids). The appointment will begin with reviewing the consent forms, followed by administration of the neuropsychological tests by the Psychometrist on the study team. We will break from testing for sample collection followed by a one hour lunch break.  The testing activities will resume in the afternoon and we will finish at approximately 3:30 p.m.

Please note the actual timing of the appointment day will vary depending on the child’s age, endurance, and the number of needed breaks.

5. Are there any benefits to my child participating?

Upon completion, participants will receive a research report which will consist of a psychology test report about the child’s concentration, attention and problem solving skills with an opportunity to set up an in-person or phone feedback session with one of the two psychologists on the research team. If a blood sample is provided, a nutrition status report will be provided which may help you and your health care provider make a plan for your future diet. We understand that families are very busy so to show our appreciation, compensation for time and reasonable out-of-pocket expenses will be provided upon the completion of the study visit activities. Participants will also receive volunteer hours following participation in our study. Please contact us for more details.

6. Can my child be in this study?

Children and youth may be eligible to participate in this study if they…

- are between eight (8) and 20 years of age
- are male or female
- Have been off ALL treatment for at least  two (2) years
- have had continuous complete remission and undergone no bone marrow transplantation.
- have no history of Down Syndrome diagnosis.
- are fuent in English.

Don’t hesitate to contact us if you think you may be eligible, but have more 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?

Details on members of the research team can be found on the Team Bios page.

9. How can I get further information?

You can contact:

Laura Hopf
Clinical Research Project Coordinator/ Psychometrist
Department of Psychology
Phone: (416) 813-6162, ext. 208285
Email: laura.hopf@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.