Coming in for your visit

Q: Where do I come for my visit? Is there parking nearby? 

A: Our building is on the Charlestown Navy Yard campus of MGH. The address is 149 13th Street, Boston, MA 02129. There is a parking garage directly across from the street from our building where you can park. The address of the parking garage is 199 5th Avenue. Most of our studies will give you a parking voucher so that you do not have to pay to park in the garage. After you park, you should check in with security in the lobby of our building and the study coordinator will come down to meet you.

Q: Does my study partner need to come? 

A: For most of our studies, the study partner does not have to physically come to the visit if you are comfortable traveling to our building by yourself. We may have to call your study partner on the phone to ask them some questions about your activities and mood. For some visits, such as visits when you will have a lumbar puncture, we will ask you to make sure your study partner (or someone else) comes to the visit with you.

Q: Can I bring family or friends who are not my study partner to my visit? 

A: Yes! You are more than welcome to bring whoever you want to your visit! We just ask that you let us know who will be coming with you to the visit so that we can check everyone in with MGH Security.

Q: What do I need to bring to my initial visit?

A: We ask that you bring a list of any current medications you are taking (including dose, frequency, and when you started taking the medication). We also review the study consent form prior to your visit and bring any questions that you may have for the study doctors. It might help to write down your questions and bring them with you to the visit.

Study-Specific Questions

Q: What is the purpose of this study?

A: Different studies are conducted for different reasons. Interventional studies are done to see if a specific intervention, such as a drug or acupuncture, can improve your health or well-being. Observational studies monitor participants for a period of time to better understand how certain aspects of your health may naturally change over time.

Q: What is the visit schedule?

A: You can find the visit schedule in your consent form or check with the study coordinator.

Q: Can you tell me whether or not I am taking placebo? 

A: We are not allowed to tell you whether or not you are taking placebo until the end of the study unless you need to know for urgent medical reasons. Most of the time, the study team also does not know whether you are taking placebo or drug. 

Q: If the study drug works and I’m in the placebo group, can I get the drug after the study ends?

A: We often do not know the answer to this question until the end of the study. Some clinical studies will add an “open-label extension” study if the results of the initial study look positive. All participants who were enrolled in the original study, whether they were on active drug or placebo, are invited to take part in the extension study where everyone is given the active drug. However, not all studies do the open label extensions.

Q: What is going to happen at my visit? 

A: What happens in your visit depends on the study that you are participating in. Common study activities include cognitive testing, blood draws, EEGs (measuring your brain’s activity), EKGs (measuring your heart’s activity), lumbar punctures, MRIs, and filling out questionnaires. The consent form explains what you can expect to happen at each visit, and you can always ask the study coordinator for clarification!

Tests and Procedures

Q: Do I need to fast for the blood draw/lumbar puncture?

A: Some of our studies require that you fast before your blood draw or lumbar puncture. If you need to fast, the study coordinator will tell you this explicitly before you come in for the visit. You can also look in the consent form to see if you need to fast. 

Q: What are the side effects of a lumbar puncture?

A: The most common side effects of a lumbar puncture are mild back pain and headache. However, these usually go away within 24 hours. In order to minimize the likelihood of these side effects from happening, you should make sure you stay well hydrated before and after your lumbar puncture, rest, and avoid strenuous exercise for 48 hours after your lumbar puncture. Lying flat after the procedure will also help reduce the likelihood of developing a headache. 

Q: Can I travel or drive after a lumbar puncture?

A: We recommend that you take time to rest for the remainder of the day after your lumbar puncture. While it is fine to drive later in the day if you are feeling up to it, we do not recommend that you drive immediately after the procedure.

Q: Can’t you just copy the results of past cognitive testing, blood tests, lumbar punctures, or MRIs that I have had clinically or for another trial?

A: Most of the time, we are not allowed to use tests from one study as data in another study, especially if the trials are sponsored by pharmaceutical companies. Even though we collect your data here at MGH, the data is sent to the pharmaceutical company and is not ours to use. Also, testing done for one trial often looks at different things than tests done for another trial, even if it is the same procedure. For example, although almost all of our trials do cognitive testing, the tests used in each trial are quite different and look at different aspects of your cognition.

Q: I have already had a lumbar puncture, will I need to get another one?

A: It depends on what the lumbar puncture is being used for in the study. If the study eligibility criteria require a “biomarker” that endorses a specific diagnosis, we are often able to use a lumbar puncture you received as part of your clinical care for our purposes. However, some of our studies are looking at special molecules that are not examined as part of a standard clinical lumbar punctures, so we will need you to undergo another lumbar puncture for the study. Some of our studies also require one lumbar puncture before you start the drug and one after you have finished taking the drug to see how the drug may have affected specific proteins in your brain.

Q: Will I get the results of the study once I’m done?

A: For most of our studies, we cannot give you any results. After you finish a trial, a study doctor will meet with you to discuss how you felt during your participation in the trial. For studies that are not run by pharmaceutical companies, we may be able to discuss your results generally at this time, but we will not be able to provide you with a report or specific details since our testing is only done for research purposes.

Miscellaneous Questions

Q: I don’t have a neurodegenerative disease but I am still interested in helping advance science in this area. How can I get involved?

A: Thank you for your interest and dedication to helping advance our knowledge of neurodegenerative diseases. Some of our studies do enroll “healthy controls”, who are people without a neurodegenerative disease. If you would like to participate, please call us at 617-643-2351 to see if we have any opportunities for you to get involved in our research!

Q: Can I be enrolled in multiple studies at the same time?

A: It depends on what type of studies you are considering enrolling in. Observational studies are used to improve our understanding of a specific population and simply monitor you during a set period of time. Whereas interventional studies, which includes clinical trials, involve a drug or other intervention (such as acupuncture) and measure whether there is an effect of the intervention in the participants. You likely will not be allowed to participate in two interventional trials at the same time. However, you may be able to enroll in an observational study while you are in an interventional trial. You should always check with each of the trials’ research teams to see if enrolling in more than one study at a time is allowed.