Intended for practicing physicians and the patients they care for, this initiative speaks to neurologists and other neuroscience professionals by using compelling facts to demonstrate how research is critical to patient care and day-to-day practice, and seeks to put those facts into action by encouraging patients to start conversations with their providers about the benefits of participating in research.
For Health Care Providers
Why is awareness of clinical research important?
Clinical research is the most effective way of testing the safety and effectiveness of new treatments. Progress in combatting disease is dependent on clinical research, and good clinical research is dependent on volunteers. Studies can be compromised by not having enough patient or healthy volunteer participants. Currently, health care providers are the number one way participants learn about clinical trials.
How should I inform patients about clinical trials?
- Hold the discussion in a relaxing space with little distraction.
- Allow the patient to include family members or other people important to them.
- Begin by discussing the patient's disease, making sure they fully understand it.
- Ask if they have any questions.
- Next, inform them on the current standard treatment, being careful to avoid jargon and summarize often.
- Lastly, inform the patient about the benefits of clinical trials and tell them you can provide more information if this is something they would be interested in. Do not push them to participate, but make sure they are aware of the opportunity
How do I find clinical trials for patients?
You can find information on clinical research studies and clinical trials from the National Institutes of Health (NIH) at ClinicalTrials.gov. The website provides updated information about federally and privately supported clinical research in human volunteers.
What information should I provide a patient interested in participating in a clinical trial?
- Begin by going over the purpose of the trial and what is involved in participating.
- Show your patient the consent document and encourage them to read it.
- Go over any potential risks participation may pose.
- Make sure the patient knows the participation is voluntary and that they may withdraw at any time.
- Clarify the randomization process and any potentially confusing descriptions.
- If the patient would like to participate, contact the trial team and refer your patient. The trial team will tell the patient if they are eligible to participate.
What is clinical research?
Clinical research involves conducting clinical trials to discover new ways to diagnose, treat, and prevent disease. These trials test the safety and effectiveness of drugs, devices, surgeries, therapies, and other tools used in the medical world.
What are the types of clinical trials?
- Natural History Screening: Researches the progression of a disease over time
- Prevention Trials: Researches preventing disease
- Screening Trials: Researches testing for/detecting disease
- Diagnostic Trials: Researches diagnosing disease
- Treatment Trials: Researches treating and curing disease
- Quality of Life Trials: Researches improving the lives of people with chronic disease
How are clinical trials created?
Clinical trials begin with an idea based on promising research or a previous study. The researcher takes the idea and formulates a protocol for testing the idea. The protocol includes details about the procedure, who participates, and the length of the trial. An institutional review board will often inspect the procedure and decide whether the potential benefit outweighs any potential risk.The clinical trial then receives funding, which can come from various organizations like a pharmaceutical company or the National Institutes of Health (NIH). After receiving funding, the trial will recruit volunteers to participate. Volunteers are informed on what the trial involves, and must give consent before participating.
Benefits and Risks in Clinical Trials
What are the risks and drawbacks of participating in a clinical trial?
- Side effects ranging from minor to severe could occur
- Participation requires more time commitment than regular treatment
- Participation can require difficult activities like complicated dose requirements or frequent blood tests
What are the benefits of participating in a clinical trial?
- Access to new treatments before they are on the market
- Quality medical attention from a trained research team
- Contribute to the process of combating a disease and potentially helping others who suffer from it
Why is clinical research important?
The rigorous investigation and analysis involved in performing a clinical trial is the most effective way of discovering safe and effective treatments. Clinical research combats disease and improves the health of our society. Clinical research depends on you, the volunteer, to get high quality data. The NIH says, “As clinical research opens new doors to finding ways to diagnose, prevent, treat, or cure disease and disability, clinical trial participation of volunteers is essential to help us find the answers.”
How do I find a clinical trial?
ClinicalTrials.gov provides updated information about federally and privately supported clinical research in human volunteers. Talking to your doctor or neurologist is also a good way to find a suitable trial.