• November 18th, 2019

Choosing to Take Part in Clinical Research

By Cheryl Vines, director of research and education for Paralyzed Veterans of America

Have you ever been asked to take part in a clinical trial or research study? Occasionally, Paralyzed Veterans of America will send out an email blast to its members and others about a new study. That does not mean we are conducting a study or are affiliated with one, often just that a researcher to help him or her has asked we ‘get the word out’. After we have verified that the study has been approved and meets clinical guidelines, we agree to send the word out. This helps the researcher and participant move research forward.

The decision to participate is left with you, the individual living with a spinal cord injury or disease (SCI/D). Should you participate? What are the benefits and risks? What should you consider in making a decision?

When most of us think of clinical trials or research studies, the image that often appears in our heads is that of a scientist at a microscope, rodents, something growing in a petri dish or ‘experimental’ surgeries. Research is much more than that.

Research studies begin with an idea, that a Physician or Scientist comes up with, based on their experience and data (facts and statistics collected together for reference or analysis) available to them. From there, the person will begin a study, collecting available information and input that supports or opposes their idea. This effort often includes input from those whose lives are impacted by the idea.

 For example, focus groups, interviews or chart reviews are conducted. You may be asked to take a survey about how much an issue impacts your function and quality of life. If the researcher can find enough data to support the idea, it becomes a hypothesis or aim and they begin work to determine how to ‘prove’ it by conducting clinical research.

The National Institutes of Health (ClinicalTrials.gov) describe the two aspects of this research:

Clinical research is medical research that involves people like you. When you volunteer to take part in clinical research, you help doctors and researchers learn more about disease and improve health care for people in the future. Clinical research includes all research that involves people. Types of clinical research include:

  • Epidemiology, which improves the understanding of a disease by studying patterns, causes, and effects of health and disease in specific groups.
  • Behavioral, which improves the understanding of human behavior and how it relates to health and disease.
  • Health services, which looks at how people access health care providers and healthcare services, how much care costs, and what happens to patients as a result of this care.

Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat disease. Clinical trials can study:

  • New drugs or new combinations of drugs
  • New ways of doing surgery
  • New medical devices
  • New ways to use existing treatments
  • New ways to change behaviors to improve health
  • New ways to improve the quality of life for people with acute or chronic illnesses or disabilities.

The goal of clinical trials is to determine if these treatment, prevention, and behavioral approaches are safe and effective. People take part in clinical trials for many reasons. Healthy volunteers say they take part to help others and to contribute to moving science forward. People with an illness or disease also take part to help others, but also to possibly receive the newest treatment and to have added (or extra) care and attention from the clinical trial staff. Clinical trials offer hope for many people and a chance to help researchers find better treatments for others in the future.

For additional information about participating in clinical research or trials, got to: ClinicalTrials.gov
https://www.nih.gov/health-information/nih-clinical-research-trials-you

Paralyzed Veterans of America sets the standard in Clinical Practice Guidelines for healthcare practitioners at all levels and all those who care for individuals living with Spinal Cord Injury or Disease (SCI/D). To learn more, please visit https://www.pva.org/publications/clinical-practice-guidelines.

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