I GET INVOLVED
By Dr. Pamela Bosch
Why should I participate in stroke research?
Researchers who study people who have had a stroke try to understand many concepts, from ideal drugs or surgical interventions to manage early effects of the stroke to how soon to begin therapy after a stroke. While these are all very important questions to answer and we need good science to answer them, you may still hesitate about being a research participant yourself.
It’s natural for you to consider: “What’s in it for me?”
Honestly, that depends on the study. But here are a few things I can tell you for sure. You will certainly learn some interesting information when you participate in a study. Researchers are passionate about what they are studying and will enjoy telling you about it! Many researchers pursue a type of research because of personal experiences they have had – someone close to them has experienced a stroke or they have observed a need for better care. For me personally, I had worked as a physical therapist in neurorehabilitation for many years and I wanted to be sure I was providing the best care for my patients. Many of my patients would express concern about physical limitations after the stroke. I was interested in helping them to maximize their ability to be physically active and reduce the risk of having another stroke.
Participating in research can also help you gain a better understanding of your own strengths and weaknesses after your stroke. As a part of a study, a researcher may assess your speech, your balance, your ability to use your arm or walking. This will provide you more information about specific problems or strengths you have and might give you ideas about new activities you can do.
Equally important though, is that as a research participant, you help to educate the researchers. That is, as you share your experiences with the researchers, you help them to understand better what it’s like to have a stroke, to live with the effects of a stroke, and what is important to people who have had a stroke. Through your insights, YOU may lead researchers to their next research question, which can help to improve the quality of medical care and rehabilitation provided to people who have a stroke.
Finally, you might be compensated with a gift card, some gas money, or a small payment for participating in a research study. This is not a given because researchers do not always have the money to compensate their participants. Also, some researchers worry that payment entices people to participate in research for the wrong reasons. Given the points discussed above, hopefully you now have many reasons to consider being a research participant!
If you do decide to participate in a research study, here are some important points to know:
1. Researchers must get every study that involves humans approved by an “institutional review board” that insures the ethical and safe treatment of people who participate in research studies.
2. The risks of the study must not outweigh its benefits, which helps to protect your safety.
3. No research participant EVER has to do something he or she does not want to do. If you decide to participate in research and you are being asked to do something you do not want to do, you have the right to say no and the researchers will not be angry or treat you differently. You are in control if you decide to be a research participant!
In case you want to get involved, there are studies being conducted currently in the greater Phoenix area below. To determine if you qualify to participate, simply contact the person listed for a given study below.
Ongoing at ASU
DR. CLAIRE HONEYCUTT’S LAB
StartReact and Stroke
Marzi is a PhD student at ASU working under the supervision of Dr. Claire Honeycutt. Marzi believes she can find a much more effective therapy for regaining function of the arm in chronic stroke survivors, especially those with moderate and severe impairment. For this study, every session takes maximum 3 hours and participants receive $50 per session ($100 total). They provide a free parking spot right next to their building for the participants. If anyone has problem with transportation, they offer some options to help as well. Marzi is looking for more participants with arm impairment.
Please either call or email Marzi Rahimitouranposhti at: email@example.com, or 480-738-9066.
DR. CORIANNE ROGALSKY'S COMMUNICATION NEUROSCIENCE AND NEUROIMAGING LAB
To learn how to improve the quality of life for stroke survivors by improving their communication abilities.
We focus on stroke survivors who have acquired difficulties with speaking or understanding someone else talking (i.e. aphasia). We also study "hidden" communication difficulties, that may arise from more subtle differences in cognitive abilities such as memory or attention.
For our current studies, we are looking for stroke survivors that:
were right-handed prior to their stroke
are native English speakers
experienced a stroke at least six months ago
either do or do not have aphasia
We compensate our participants $10-30/hour, depending on the particular study.
Most studies involve 2-4 hours of your time (which can be broken up onto different days).
Contact information: Corianne Rogalsky, email firstname.lastname@example.org, or call (480) 965-1785.
DR. SYDNEY SCHAEFER’S
Motor Rehabilitation and Learning Lab
Dr. Sydney Schaefer’s Motor Rehabilitation and Learning Lab
This lab is conducting a study to test whether people who have experienced a stroke can acquire and generalize learned information after task-specific training of their arm and hand from one task to another, and if these processes are influenced by memory, spatial, or other cognitive abilities. In short, this research aims to study how stroke affects motor learning.
DR. SYDNEY SCHAEFER’S
Strokes & Aging Lab
The purpose of this study is to test whether and how older adults with and without stroke can acquire and generalize information after task-specific training of their upper extremity (arm and hand) from one task to another, and if these processes are influence by memory, spatial, or other cognitive abilities. In short, this research aims to study how aging affects motor learning.
Individuals will spend 1-1.5 hours per day for up to 6 visits over two months while participating in the proposed activities, with an optional MRI visit portion which would not exceed one hour.
This study will include a number of standardized assessments and measures as a “baseline”. These may include questionnaires on demographics, activities of daily living, handedness, and measures of grip strength, tactile sensation, fine motor skill and dexterity, global cognition, simple visual perception, construction, and memory, among other assessments.
Participation in this study is voluntary. If you choose to participate, you will be compensated $30 per visit, including the MRI visit.
For more information and to find out if you qualify, please contact: Jessica Trevino, Project Coordinator Phone: 480-965-3150 email: email@example.com.
Ongoing at NAU
DR. PAMELA BOSCH’S LAB
Research conducted in Phoenix
Dr. Bosch’s goal is to find efficient and enjoyable ways to improve cardiovascular fitness after a stroke that also help people function better and reduce the chance of having another stroke.
Her current study uses two different exercise intensities on a bicycle ergometer to determine if they affect balance or thinking skills after a stroke. Participants who complete three sessions will receive $100. Parking fees are paid on campus.
DR. MICHAEL MCCARTHY'S LAB
Research conducted in Flagstaff
A strong and positive relationship is critical for the well-being of stroke survivors and their family caregivers. Researchers at Northern Arizona University in Flagstaff are pilot testing a program designed to strengthen the relationship between survivors and family caregivers so that both members of the “care dyad” may thrive. Survivor and family caregiver dyad participants in this research study must be within 12 months of having had a stroke. They must be at least 21 years old. They must be willing to attend at least two in-person meetings at the NAU campus in Flagstaff (the rest of the meetings can take place by telephone, Skype, or whatever method participants prefer).
Participants will receive two $40 gift cards in appreciate for their time and they may be eligible to receive reimbursement for travel expenses.