About the People who Work on the Clinical Research Glossary
1. What is the MRCT Center?
The MRCT Center is a research and policy center in Boston, Massachusetts with a team dedicated to developing health literacy resources to make research easier to understand.
We work with many different people and groups from the patient advocacy community and research industry, so all kinds of voices and perspectives are included in the work we do.
2. Why did the MRCT Center develop this Clinical Research Glossary?
We heard from many people, including patient advocates, researchers, study participants, and medical writers, that this kind of glossary was needed for:
- the public to use, and
- research professionals who want to share clear and understandable research information with patients and participants.
This glossary is the only one we know of that is:
- focused on clinical research,
- publicly available,
- developed with patients and participants, and
- reviewed by the community.
3. Who else is involved in creating the Clinical Research Glossary?
The MRCT Center has brought together a group of volunteers with different perspectives to create the definitions and supplemental content you find in this glossary. By including diverse voices, we learn from each other and get to think about the different ways patients and caregivers might receive a definition.
- This workgroup includes patient and caregiver advocates.
- This workgroup also includes leaders from across the clinical research industry.
- Some examples of groups that are included are research centers, medical writers, biotechnology companies, and even graphic designers.
Click here to view the list of the Clinical Research Glossary team members and collaborating organizations.
4. What is CDISC?
CDISC is short for Clinical Data Interchange Standards Consortium. CDISC is a non-profit organization that works on data standards so that research information is easier to use, share, and understand.
CDISC brings together a community of research experts from around the world who represent a wide range of backgrounds. CDISC also ensures that all their standards go through a public review process.
The MRCT plain language Clinical Research Glossary became a CDISC global standard in 2023.
About the words and definitions IN the clinical research glossary
5. What kinds of words does the Clinical Research Glossary include?
The Clinical Research Glossary is focused on words that can help people better understand clinical research concepts so they can feel more confident when deciding whether or not they want to join a research study.
This means we focus on defining words that are:
- Helpful to understanding clinical research or being a study participant,
- Commonly used in participant-facing clinical research materials, like recruitment flyers, consent forms, and study summaries.
- Used when explaining concepts related to research, like some math terms that could help with understanding research results.
- Common research procedures, such as screening and on-study activities, like blood draws or an MRI.
6. How are the definitions created?
When a definition is proposed, the workgroup reviews and discusses it.
- The workgroup has to decide and vote on whether the definition can be accepted or not. If a few people in the workgroup cannot accept the definition, we work together to write a revised definition that works for most.
After creation, the definitions go through an important public review process before being finalized and released. Learn more about the public review here.
Prioritizing patient and public participation in this process is critical for the definitions to be helpful to as many people as possible.
Our goal is not perfection but rather to make sure the definition is accurate, clear, and in plain language.
7. Why is there so much extra information about each word?
We provide more context about each word for people who want extra information. We aim to clarify definitions and their uses so that you can hopefully feel more confident about understanding the meaning of a research word or concept.
We also want you to be able to learn more about when the word might be seen in clinical research documents and what questions might be helpful to ask.
8. What health literacy best practices does the Clinical Research Glossary follow?
We aim for all our definitions to be in plain language so they are easier for everyone to understand. These definitions are meant to be simple enough to help people who are learning more about clinical research and want to make informed decisions about participating in a research study.
The guidelines the workgroup follows when creating definitions includes the following:
- Keep definitions as a single sentence.
- Avoid complex sentences with many pieces of information within one sentence.
- Avoid using many commas, which can make a sentence more complex.
- Avoid long sentences. 10-15 words per sentence is ideal. 20 or fewer words per sentence is acceptable.
- Do not use brackets to separate ideas, symbols, or abbreviations such as “e.g.” and “i.e.”
- Use short, simple words that don’t have more than one meaning or use (for example, “to do a study” as opposed to “carry out a study”).
- Use a tone that is more like how you might speak to someone.
- Be precise and concise while leaving out unnecessary words. This means removing words or terms that do not change the message of the sentence.
- Use active voice when possible (for example: “Researchers do clinical trials to find out…” instead of “Clinical trials are done to find out…”)
9. What is the readability and grade level of definitions in the Clinical Research Glossary?
We do not use a tool to check for readability or grade level. This is because short sentences do not have reliable and accurate readability and grade-level assessment measurements. Instead, we use the health literacy best practices listed above, the experience of our workgroup members, and the public review process (including review by 5th graders) to ensure that definitions are clear and understandable.
If you want to learn more about how to review definitions during a future public review period, please contact us here.
10. Is the Clinical Research Glossary available in other languages?
The online Clinical Research Glossary can be translated into 50 different languages using the Accessibility Menu module on this page. This widget uses Google Translate, which members of our organization’s Interpreter Services department have described as an acceptable translation starting point. We know, however, that translation is a nuanced process, and we continue to seek volunteer partners to develop official translations of this resource.
Currently, the downloadable PDF and Excel files are both available in American English.
11. Can I suggest new words to add to the Clinical Research Glossary or changes to existing words?
Yes! We just ask that any words you request are clinical research terms. Please see our criteria listed above in Question 5.
Please click here to contact us with your suggestions.
About the images in the Clinical Research glossary
12. What process does the MRCT Center team follow to create the images in the Clinical Research Glossary?
Images are created in collaboration with graphic design students who work with the MRCT Center team to brainstorm, develop, and finalize the images.
The images are then reviewed by the Clinical Research Glossary workgroup.
Our artists prioritize accessibility, diversity, and inclusivity.
The purpose of each image is to augment the definition and provide a visual cue to help support understanding and learning.
13. How is the alt-text for each image generated?
Alt-text for each image is developed by the MRCT Center team following the recommendations offered by Perkins School for the Blind https://www.perkins.org/resource/how-write-alt-text-and-image-descriptions-visually-impaired/.
We also consult with experts from the Usher Syndrome Coalition, who review and provide guidance on the alt-text for various Clinical Research Glossary images.
14. What do the different icons used in the images mean?
Please see our legend explaining each icon here.
15. Can I use the definitions, content, and images in the Clinical Research Glossary in my own materials?
Yes! All the content on the Clinical Research Glossary website, including the images, can be used as long as the use agrees with the MRCT Center’s Creative Commons License, including appropriate attribution. https://dev.mrctcenter.org/how-to-credit-the-mrct-center-when-using-the-clinical-research-glossary/
16. Can I provide feedback on definitions and other content on the Clinical Research Glossary website?
Yes! You can provide comments on the current content and sign up to be notified when the next public review period opens up using this form.
About the clinical research glossary
17. How often is the glossary updated?
Moving forward, an updated version of the Clinical Research Glossary will be released every September.
Please click here to contact us with your suggestions.
18. What is public review?
Public review is a process for new definitions to be reviewed by external users of the Clinical Research Glossary before the definitions are officially published.
The public review period for the Clinical Research Glossary is expected to happen every June before an updated version of the glossary is released every September.
You can sign up to be notified when the next Clinical Research Glossary public review period opens here.
19. Where can I read more about the Clinical Research Glossary?
You can learn more about the Clinical Research Glossary in the following materials:
- Baedorf Kassis, S., Facile, R., To, K., White, S., Bierer, B.E. (2023). Use Plain Language to Increase Understanding: The MRCT Center Clinical Research Glossary. DIA Global Forum.
- Baedorf Kassis, S., White, S., & Bierer, B. (2022). Developing a consensus-driven, plain-language clinical research glossary for study participants and the clinical research community. Journal of Clinical and Translational Science, 6(1), E50. doi:10.1017/cts.2022.12
- Baedorf Kassis, S.,Bahador, B., Gawrylewski, H., Gertel, A., Pickard, B., S. A. White, L. and Bierer, B.E. (2020.) Promoting equity in understanding: A cross-organisational plain language glossary for clinical research. Medical Writing, 29(4).
About using and referencing the glossary
20. Can I download the Glossary?
Yes, the glossary is available to be downloaded in the following formats:
21. Can I use the definitions, content, and images in the Clinical Research Glossary in my own materials?
Yes! All the content on the Clinical Research Glossary website, including the images, can be used as long as the use agrees with the MRCT Center’s Creative Commons License, including appropriate attribution. Learn more about how to reference the MRCT Center when using the Clinical Research Glossary here.