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Research Versus Care
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"...sometimes I forget that I'm on a study because everything's so routine: I take my medicine in the morning, I take my medicine at night."
Bianca, child in kidney disease study

Research is different than care

Clinical research can look a lot like regular, or standard, medical care. Sometimes it is hard to tell the difference.

Here are some of the ways they may be similar:

  • The researcher and your healthcare giver can be the same person.
  • The setting may be your regular clinic.
  • The treatments may seem the same.

Research is done to help find out if a treatment or procedure is good for a large group of people with a certain disease or condition. Research helps to answer questions for the future health of those populations. Standard medical care, however, focuses on individual needs in the present.
This graphic visually represents the concept that standard care is about an individual's health concerns now, but a clinical study focuses on larger groups of individuals with results that may not happen until well into the future.
When considering enrolling your child in a study, make sure you understand the difference between the regular care your child gets at the doctor and what's involved in research. Even when the place and healthcare providers are the same as your regular healthcare team, find out what makes it a research study.

Make sure you ask: How is this different from standard care?

  • Will I see different doctors and nurses for the study?
  • Will I go to a different hospital or clinic for the study?
  • Will the doctors and nurses ask me a lot more questions about my child's condition?
  • Will there be more paperwork or additional tests when we are in the study?
  • Will there be more rules and deadlines in the study?

Here is an example of how some things in a clinical study are the same as in regular care, while some are different.
This table shows that some activities such as visits with physician or nurse, baseline testing, medications or procedures and follow up testing can be the same in regular care or a clinical study. Activities such as paperwork to enroll (consent), eligibility screening, or interim questionnaires or forms are usually only part of a study.
"...if it does not work for my child, it might be able to work for another child and somewhere down the line...by me doing this clinical study today..."
Sharda, mother of child in kidney disease study