Getting started
We know that asking you to participate in research can feel overwhelming, especially at a time like this.
We want all patients who decide to participate in research to be empowered.
This means we want you to:
Understand common terms you might hear
Know your rights and how those rights are protected
Ask all your questions
Make informed decisions
To help make this a reality for every patient, here you can find a glossary of common research terms and a simple summary of participant rights & research responsibilities.
If you have any questions, please Contact Us or speak with your healthcare provider.
Glossary
Aphasia |
A disruption of the ability to easily communicate your message and understand others. After a stroke, many patients experience aphasia and need help to communicate the way they did before. Aphasia impacts communication, but not intelligence or intellect. |
Consent |
Permission you give others to include you in an activity To participate in research, you must consent to certain activities and can remove that consent any time you no longer wish to participate. Often, consent requires a signature by either the patient or their legal representative and a research team member as part of an agreement about the purpose, activities, risks, and benefits of a study. This agreement is called an Informed Consent Form. |
Imaging |
The process of building a picture of the inside of your body, generally from the outside Often studies will include some type of imaging. There are many types of images that can be useful to understanding your condition. Most people are familiar with x-ray imaging. For brain injuries, like stroke, the most common images are magnetic resonance images (MRI) and computerized tomography (CT or "CAT" scan). Different types of images provide different information to research teams and have different limitations. Some types of images require "contrast dye," which is a liquid delivered into your vein using an IV that can help make the inside of an organ more visible. It may make parts of your body feel warm for a short time. If imaging is part of a study, the team will discuss the details with you. You should ask all questions you have. |
Observation |
Systematically watching, recording, or measuring someone or something Many studies are observational. Research team members learn more about patients like you by seeing how you behave and change over time. In these studies, there are no added activities to support your relief or healing. You simply do what you and your doctor have decided is important for your therapy. However, you may be asked to answer questions or complete short activities that help the research team learn more about you. Often, observation involves contact with the research team as you recover after you leave the hospital. |
Research |
The systematic investigation to add to what is known about a topic At Johns Hopkins we do research on a number of topics related to our patients' health and well-being. |
Stroke |
Damage to the brain due to lack of oxygen Every patient at The Comprehensive Stroke Center at Johns Hopkins Hospital has experienced a stroke. Strokes can be caused by different things and damage may include any part of the brain or many parts. Differences in what parts of the brain were damaged will make your experience and recovery from stroke unique to you. |
Study |
A specific investigation that answers a question or questions about a topic You may be asked to participate in a study related to your condition to help us treat patients like you more effectively. |
Therapy |
Actions intended to relieve or heal you. Therapy can take many forms, and may include medications, devices to support your body's recovery, or professionally-guided and structured activities like physical therapy, occupational therapy, or speech-language therapy. The therapy that is right for you is decided by you and your doctor working together. |
Your Rights & Our Responsibilities
Your Rights |
In all studies conducted at Johns Hopkins, you have the right to:
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Our Responsibilities |
In all studies conducted at Johns Hopkins, we must:
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