Thinking of participating in a research study? Here are some frequently asked questions:
Every research study is different, so we recommend that you talk to the study coordinator for the study you are interested in for more details. However, the majority of our research visits follow a similar pattern. If you participate in an initial study visit, the first thing you will do is go through an informed consent form with the study coordinator. Depending on the study, this may be done virtually or in person. The informed consent form will describe many things about the study, including but not limited to the purpose of the study, the risks and benefits associated with the study, who will have access to the information collected during the research study, and who to contact if you have more questions. If you are in a clinical drug trial, this discussion may also include a medical doctor on the study to discuss the drug that is being studied.
After reviewing the informed consent form, it will be up to you to decide if you would like to sign. This process is completely voluntary. If you choose to sign and participate in the study, the visit will begin. Most of our studies include brief cognitive screenings, conversations with you and sometimes a study partner about your thinking and memory, and a review of your medical history and medications to determine eligibility, although not all studies will require the same things. Some other things you may encounter in your study visit are an extended cognitive testing period, health questionnaires asking questions about things such as your thinking, mood, sleeping patterns, etc., a neurological and physical exam with the study doctor, blood work, and vital signs such as blood pressure, weight, and temperature.
A research study visit can take anywhere from 1 hour to 6-7 hours, depending on the procedures involved. Please discuss the expected time with the study coordinator. Sometimes, visits can be broken up into multiple days or breaks can be scheduled in for the longer visits. Depending on the study, some procedures may be able to be completed virtually.
Cognitive testing is conducted to provide an objective indicator of how people are functioning in different areas such as memory, language, attention, planning and organization, and processing speed. These tests can detect very subtle changes in cognition, even in healthy adults with no memory complaints, over time. Because of this, cognitive tests are designed to be challenging. If a healthy person gets 100% correct on a test, the test is not as useful as it could be. Therefore, cognitive tests are designed to show a person’s strengths and weaknesses, which differ among people at all levels of cognitive functioning.
The length of cognitive testing varies per study. On average, a full cognitive battery for research can take about 2-4 hours depending on the testing protocol for the study. Please check with the study coordinator for the length of the cognitive testing portion of the study.
Magnetic Resonance Imaging (MRI) is often used in a clinical setting to help a doctor diagnose a disease or to evaluate the extent of an injury. In our research, MRI scans help us track structural changes in the brain over time and allow us to see whether those changes coincide with other symptoms. From the participant’s perspective, the experience of having a research MRI scan is very similar to having an MRI scan as part of a normal clinic visit.
As a result, we often get asked by a participant if they can share a copy of their research MRI scan with their primary care physician, so they can look at it and see whether they may have a disease, such as Alzheimer’s. However, research MRI scans are actually very different from clinical MRI scans and the two are not interchangeable. When you go to a doctor with a complaint or an injury and they put in an order for you to have an MRI scan, the images obtained from that scan are standardized by a radiologist, who is a doctor trained to interpret medical images and make a diagnosis based on specific symptoms.
For a research MRI scan, the type of images that we obtain are chosen specifically based on the research question that the research team is trying to answer, and they are not designed to provide a diagnosis for the participant. MRI scans that are performed for research purposes are usually not formally interpreted by a radiologist. In the rare case that a clinically-relevant abnormality is noticed on a research MRI scan, the participant is notified. They are then encouraged to receive a doctor-ordered clinical MRI scan to assess the abnormality and to determine whether any further treatment is necessary.
In research, the MRI scan itself is used to help answer the questions we are studying. However, the results from the research MRI scan may not start to be meaningful until the end of the study, when all of the data are grouped together and analyzed, and even then, what those results mean for any individual participant may still be unclear. Research MRI scans are very important for understanding how brain structure relates to cognitive symptoms, and hopefully research in this area will contribute to our ability to use MRI data to help diagnose and inform treatment plans for patients with neurodegenerative diseases, such as Alzheimer’s and Parkinson’s.
Many of the tests we are conducting are done so to find out more information or test ideas, and are not yet proven clinically. Because of this, we don't actually know what they mean for an individual - that is why we are doing the research. Therefore, the results would not actually mean anything to you or your doctor were we to provide them. Also, many of the procedures we do are done through a research lens, meaning that we are not doing the same tests or looking for the same results as your doctor might.
A lumbar puncture involves placing a needle between the bones of the lower back, below the end of the spinal cord, to draw the fluid known as cerebrospinal fluid or CSF. This fluid bathes the brain and contains the proteins of interest and other molecules that are markers of brain health and disease.
Adopted from the University of Wisconsin’s Alzheimer’s Center
To learn more about lumbar punctures and cerebrospinal fluid, visit the Colorado Aging Brain Lab website
Cerebrospinal fluid (CSF) is a fluid made in the brain that helps protect the brain and the spinal cord. Importantly, it contains numerous proteins that are important for brain health. It can also contain inflammatory markers and other aging related proteins that are associated with disease states, including early markers that are potential risks for Alzheimer’s disease. The CSF provides an important and unique window into brain health that helps us better understanding factors that contribute to both healthy aging and Alzheimer’s disease.
CSF is a special gift to aging research, as it allows us to examine brain proteins during a person’s life. To help detail why this is such an important part of research, please see the following videos, which were developed at the Knight Alzheimer’s Disease Center in St. Louis
To learn more about lumbar punctures and cerebrospinal fluid, visit the Colorado Aging Brain Lab website
Scheduled for an upcoming research visit? Here are some frequently asked questions:
Please bring the following items to a research visit:
List of current medications, that includes the name of the medication, dosage, dosage schedule, and when you began taking the medication
Water and snacks - most studies will provide refreshments but if there is something specific you would like to bring, please do so
Book or something else to do in case there is down time.
If you are participating in a study and have cognitive impairment to the point where someone else has been designated to make medical decisions for you, please bring Medical Durability/Power of Attorney paperwork with you
Light sweater - our visits often take place in medical facilities, which can be cold
If your study requires that a study partner attend the appointment with you, we highly recommend the study partner also bring water and snacks as well as a book or something to do. Many times the study partner will have down time while the person enrolled in the study is doing one of the research tasks.
We have multiple locations on campus where research visits can be held, so please confirm with your study coordinator where your visit will be taking place. The most commonly used locations are:
12469 East 17th Pl, Aurora, CO 80045
Parking: Cheyenne Wells Parking lot
Your study coordinator will meet you when you park, and either provide you with a code or a parking tag for your visit. Please do not pay for parking. If provided a code, please have your license plate number ready as it will be needed to pay for the parking.
Clinical Trial Research Center (CTRC) in the Anschutz Health Sciences Building
1890 N Revere Ct, 6th floor, Aurora, CO 80045
The Clinic is in the NE corner of the 6th floor, accessible by the elevators in the NW end of the
Front Desk Number: 303-724-1225
Parking: AHSB Parking lot (12795 E 19th Ave Aurora, CO 80045)
Prior to arrival you will have received a code from your study team that will grant you access
to the parking lot for your visit. Please note the code changes frequently, so please make sure you have the current code from the study coordinator. More information and directions to the CTRC can be found here.
The study coordinator will meet you in the parking lot and input a code to ensure you are not charged for parking. Please have your license plate number ready as they will need it to pay for the parking.
If the Ignacio lot is full, please park in the Georgetown lot.
For our MRI visits, we require participants to wear scrubs that will be provided by us for you to wear. However, please make sure that any underclothes do not have any metal or metallic threads on them. For women, this may mean considering the type of bra that you wear, as the clasps are often composed of metal, even if they look plastic. For men, this may mean making sure you do not wear any underwear that has metal buttons on them. We will also ask you to remove your jewelry and eyeglasses when it is time for the scan.
If you take a daily baby aspirin (81 mg), you will need to stop taking your aspirin for 7 days prior to lumbar puncture visit. We also recommend that you eat a hearty meal and drink lots of water the day before and the day of your appointment. Being hydrated is the best way to prevent headaches, a potential side effect of lumbar punctures.
On the day of your lumbar puncture, you should wear loose clothing or lounge wear (such as leggings or sweatpants), so that the provider doing the procedure can easily adjust clothing as needed.
We ask that you please eat a good meal before the visit (unless the study coordinator specifically directs you to fast) and drink a lot of water both the day before the visit and the day of the visit. We also suggest wearing a shirt that is either short sleeved (and bring a jacket) or a long sleeved shirt with loose sleeves that can be rolled up comfortably above the elbow.
Nope! Unless the study coordinator tells you otherwise, there are no special preparations or clothing choices that need to be worn for a PET scan.