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Frequently Asked Questions for Families
What does taking part in a study involve?
Will my information be kept confidential?
Who is paying for this research?
What does taking part in a study involve?
Each research project's activities are different. All studies at the Neurodevelopment Research Laboratory require families to complete behavioral and cognitive assessments. Some studies involve an MRI scan. Other studies might require assessments that may be completed over the telephone or via a secure website. The duration of each visit will vary from study to study.
What is an MRI scan?
MRI, or magnetic resonance imaging, is a way to take pictures of the brain using a large magnet, radio waves and a computer. The water molecules in the brain send out signals that the computer turns into images. These images reveal the differences between types of tissue in the brain.
The magnetic fields have no known harmful effects. MRI does not use x-rays and is not painful. Thousands of scans are carried out safely everyday. As long as the individual receiving the MRI does not have any metal implants, MRI is safe. All volunteers will be screened for metal implants.
How can I take part?
Our research currently includes individuals diagnosed with Prader-Willi syndrome or an autism spectrum disorder between 7 and 40 years of age. Many of our studies also include typically developing individuals for comparison.
For more information and to find out if there is a current project for which you qualify, please contact Anastasia Dimitropoulos at axd116@case.edu or 216-368-0112.
Why should I take part?
Participants receive feedback on cognitive and behavioral assessments. This information may help educational planning and vocational training. Participants receive an honorarium to help defray the costs incurred for time and travel. Parking costs are reimbursed.
By taking part you will be helping us learn more about the characteristics of Prader-Willi syndrome and autism spectrum disorders. Our research is based upon the belief that we can improve treatments when we have a better understanding of the symptoms of these disorders.
Will my information be kept confidential?
Yes, all of the information obtained will be confidential. Research publications will never use the name of an individual or family. All families are assigned a confidential identification number, which will appear on study materials instead of a name. Study materials are filed in locked cabinets inside locked storage rooms, in accordance with governing regulations.
What if I want to drop out?
Taking part in our studies is voluntary. You may withdraw from the research at any time. If you choose not to take part at any point, this will not in any way compromise the availability of care or your eligibility to take part in other studies.
Who is paying for this research?
Our researchers receive funding primarily from grants from entities such as the National Institutes of Health, the Prader-Willi Syndrome Association and other funding organizations. There is no cost to your family to take part.