Participant FAQs

Q: What will I do at a Brain Aging Program appointment? 

A: There are three components to an appointment. Neuropsychological/cognitive testing, a brief neurological examination, and an MRI Scan. 

 

Q: Do I have to do all three components? 

A: No, you can choose to do all, some, or none of the components.  

 

Q: How long does testing normally take? 

A: A typical appointment takes 3 hours. This may vary depending on the components you are completing and the format of the test. 

 

Q: Do I have to come to Framingham to complete testing? 

A: No, in addition to testing in person in Framingham we also offer home visits and testing via videoconferencing.  

 

Q: I don’t want my information shared with commercial entities. Can I opt-out? 

A: Yes! FHS asked all participants to either opt-in or opt-out of commercial data sharing a few years ago. If you’d like to update/withdraw your consent, we can ask a staff member from the Core to reach out to you.     

 

Testing Questions: 

 

Q: If I agree to neuropsychological testing today, does that mean I have to agree to it in the future? 

A: No, you have the right to refuse at any time.  

 

Q: If I decide not to do neuropsychological testing today, does that mean I can’t in the future? 

A: No, unless you indicate that you would never like to do cognitive testing again, we will reach out to you in the future to see if you’re interested in the next round of testing. 

 

Q: If I agree to neuropsychological testing, do I have to complete every part of the test? 

A: No, you can ask to stop a particular section and try a different one or end testing altogether. It is always your decision whether you continue with testing or not. 

 

Q: If I am asked to come in for repeat neuropsychological testing, does that mean I have dementia? 

A: No. We ask participants to come in more frequently for testing based on different parameters such as age or enrollment status.  

 

Q: Can you send a copy of my neuropsychology test results to me or my doctor? 

A: We understand that you want to have as much information about your health as possible and are working on finding ways to provide you with this information in an accurate manner. Since our test battery was put together for research purposes, we are working on how to share this information in a way that could be useful. 

 

Q: If the neuropsychological testing is outside normal limits, will you tell me/my doctor? 

A: If the study team has significant concerns about your functioning or safety, we may reach out to your doctor to have them follow up with you. 

 

MRI Questions: 

 

Q: Where is the MRI center? 

A: MetroWest MRI 761 Worcester Road, Framingham, MA 01701. It is a big brick building on the westbound side of route 9. 

 

Q: Am I able to stop the MRI exam while it’s happening if I feel claustrophobic? 

A: Yes, the MRI technicians can hear you at all times, so you can terminate the scan at any time. 

 

Q: Am I eligible for an MRI? 

A: If you have a pacemaker or irremovable metals on or in your body (such as post-surgical hardware) you are not eligible for an MRI. If you have a Continuous Glucose Monitor or an insulin pump, you must be willing to remove them for the duration of the MRI. 

 

Q: Is it possible to have a copy of the MRI and/or neurology report sent to my doctor, regardless of the results? 

A: Yes, if you sign a separate release form, we can send a copy of the report (not the MRI scans themselves) to your doctor. 

 

Brain Donation Program: 

 

Q: What is the Brain Donation Program? 

A: The Brain Donation Program is an opportunity to further contribute to the research done at the Brain Aging Program by donating your brain to science. Only Framingham Heart Study participants are eligible to be brain donors through this specific program. 

 

Q: What do I have to do to become a brain donor? 

A: You must fill out paperwork and let your family know of your wish to donate your brain. It is extremely important that your next of kin are aware of your wishes, as they will be the ones contacting us.  

 

Q: I am the next of kin for a brain donor, what do I need to do? 

A: At time of serious illness, impending death, or as soon as possible after death occurred, call the 24-hour hotline and report the situation. We will handle all arrangements for the brain removal and pay all costs related to the procedure. 

 

Q: What happens to a brain that gets donated? 

A: The brain is examined using a detailed neuropathological protocol. This information is then compared with the clinical data collected throughout the individual’s participation in the Heart study. A report explaining these results is then sent to the designated next of kin. 

 

Q: If I have more questions, who can I ask? 

A: If you would like to learn more about the program or have any questions, please call Sophie Donohue at 508-663-4078.