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Click here for a glossary to help you understand words and phrases frequently used in clinical research.

A data lexicon is a list of the most common data terms and their definitions.

Data is everywhere these days and getting the hang of the lingo is a must.

Since some of these terms can be confusing, here is a list of the most common ones.

Visit the iTHRIV portal to see the full list.

Clinical Research looks at people, their makeup, and their activities in order to understand health and disease.

Clinical research helps find new and better ways to:

• Understand health

• Prevent disease

• Test for disease

• Treat disease

Types of clinical research include:

• Clinical trials (see below), which test new treatments for a disease, and

• Natural history studies, which collect health information to understand how a disease develops and changes over time.

(From: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/clinical-research)

Some common reasons for doing clinical trials include:

• Find ways to prevent a disease or condition. These ways can include medicines, vaccines, or lifestyle changes.

• Find ways to identify risk factors for a disease or condition

• Find ways to better identify or recognize a disease or condition

• Decide if one or more treatments (for example, drugs, medical devices, approaches to surgery or radiation therapy) cure or improve a disease or condition

• Find ways to improve the comfort and quality of life for people with a chronic (on-going) illness

(From: https://clinicaltrials.gov/ct2/about-studies/learn#WhatIs)

A clinical research trial is a way of testing medicines and treatments. All medicines and treatments must be tested and tried by people so that we can be sure that they are safe and that they work. For more information, check out this video from the National Institutes of Health (NIH).

Clinical research is research that involves people like you. It is important because when you volunteer to take part in clinical research, you help doctors and researchers uncover better ways to understand, prevent, test for, and treat the diseases that affect you, your family, your friends, and your community.

Clinical trials are important for:

• Reducing the chance of developing a disease

• Finding new tests for diseases

• Discovering new treatments for diseases

• Finding which approaches do and do not work in humans in the real world (that cannot be learned in the laboratory) )

• Helping decide if the benefits of a treatment are worth the side effects

Researchers are required to follow rules that are enforced by government agencies to make sure every participant is as safe as possible. Click here to read a brief history of clinical research trials and learn about a few government agencies and laws that oversee the protection of research participants.

Additionally, here is what the NIH says:

The people who participate in clinical trials are medical heroes who make a difference in everyone’s lives and who can help spread awareness about the need for more involvement in clinical research.

This is where you can come in!

You can take part in a clinical research trial that you or a loved one may one day benefit from. If you are eligible for a clinical research trial happening in your area, you will have the opportunity to make a difference in many people’s lives.

Whatever your health situation may be, you can become involved in clinical research.

In order to be safe and effective for everyone, there needs to be a representative pool of individuals looking to become medical heroes in clinical research trials. Whether you are feeling healthy or not, you can look for a trial that is right for you.

Step 1: AWARENESS

Step 2: ELIGIBILITY

Step 3: INFORMED CONSENT

Step 4: UNDERSTANDING POTENTIAL BENEFITS & RISKS

While clinical trials are important, the choice to participate in one is very personal and depends on your unique situation. You and your doctor need to weigh the benefits against the risks and decide what’s best for you, when presented with a clinical trial.

(From: https://oley.org/page/clinical_trials)

Researchers don’t know what the results of clinical trials will be. (If they did, they wouldn’t have to do the trials!) This uncertainty can make it hard for a patient to decide to participate in a clinical trial. While in rare cases, patient volunteers have been hurt by the treatment or procedure on a clinical trial, millions of people have been helped, because medical heroes chose to participate in a trial that resulted in a new, more effective treatment.

iTHRIV’s ultimate goals are to get new treatments to patients more quickly, to support research that benefits the community, and to connect the community with researchers so that the community can have a say in every step of the research process.

iTHRIV provides educational opportunities and access to resources and services that promote collaboration and boost health in the community.

We want to connect you with researchers so that you can share your concerns, interests, and needs.

There are multiple opportunities for you to make a difference when you join the team of community members who are improving our understanding of our local communities, health topics and research. iTHRIV is looking for community members to be a voice for research and/or become a community research team member. Because community collaboration is so important to us, iTHRIV community members are often compensated for their time and efforts.

To grow the iTHRIV community team we have created a community registration form. The form allows you to select your area of interest, preferred form of communication and takes 2-3 minutes to fill out.