Patient Resource Hub

< Back to Home Page

 

This website is designed to serve as a resource hub, connecting you to reliable, factual resources that can answer any questions you may have on clinical trials, so that you have all the information necessary to decide if enrolling in a clinical trial is right for you and your family.

Knowledge Empowers! 

Only you and your family can decide if a clinical trial is right for you. At BIO, we believe that pharmaceutical companies, federal agencies, patient organizations, and other stakeholders in drug development share an important responsibility to ensure that anyone making this choice is presented with all the necessary information -- both potential benefits and risks. By ensuring that potential clinical trial participants are well-informed, we empower patients to take an active role in the management of their own health. 
 

People participate in clinical trials for many reasons

Participants generally fall into two categories: Patient Volunteers or Healthy Volunteers.

Patient volunteers, or people with known health issues, participate in clinical trials to better understand, diagnose, treat, or cure those diseases or conditions. Patients with any disease type and at any stage of illness -- including newly diagnosed patients, patients in remission, and patients who have exhausted all other treatment options -- can participate in clinical trials. Patient volunteers take part to help others, but also to potentially access the latest experimental treatments and to benefit from additional care provided by clinical trial team members.

Clinical trials are not just for people with health conditions. Healthy volunteers, or people without known health issues, participate in clinical trials to test a new drug, device, or procedure for the benefit of others. A healthy volunteer might have a loved one with a health issue and want to participate in research that could potentially benefit them. Others might participate for the satisfaction of helping researchers move science forward and improve our understanding of how to prevent and treat diseases. For example, clinical trials of vaccines -- including the trials for Covid-19 vaccines -- involve healthy volunteers. Healthy volunteers are almost always paid for participating, too.

Generally, healthy volunteers participate in Phase I trials, which are performed to ensure a treatment is safe and determine the correct dosage. Patient volunteers can participate in Phase I trials and later phases, which demonstrate that a treatment is both safe and effective.

Patient and healthy volunteers can learn about clinical trials in a variety of ways -- from their doctor, an advertisement seeking volunteers, or a website like ClinicalTrials.gov. It's always best to check with your doctor before joining a clinical trial.
 


Getting Started with Clinical Trial Basics

What is a clinical trial?
A clinical trial is a research study that looks at ways of preventing, detecting, and treating disease. The primary goal is to find out whether a new drug, medical device, diagnostic test, or surgical procedure is both safe and…
Why do people participate in clinical trials?
All types of people are needed to join clinical trials. 
What questions should I ask my doctor about participating in a clinical trial?
Talk to your doctor about any questions or concerns you may have before deciding to enroll in a trial. Your doctor can also help you come up with important questions to ask the clinical trial team before you meet with them.
Why is diversity important in clinical trials? Are there specific resources for people of color who are interested in learning more?
Clinical trials are the primary way we determine whether experimental treatments are safe and effective. Increasing diversity better reflects the range of populations that will use the therapy, or vaccine, being studied...
How are companies working to increase diversity in clinical trials and protect those who participate?
The biopharmaceutical industry acknowledges past wrongdoings and continues to develop and put in place measures that close gaps in clinical trial representation...
There are historical cases where people of color were mistreated in clinical trials
Today, all patients and research participants -- including people of color -- are kept safe by law and ethics committees, including Institutional Review Boards (IRB), that oversee clinical trials...
Finding a Clinical Trial
Where can I find a clinical trial for my disease?
If you'd like to find clinical trials for your disease, you should talk to your doctor about available options. Additionally, there are resources available on the internet...
Are there disease specific clinical trial resources?
Many patient advocacy groups and medical research institutions provide websites to help patients find clinical trials...
Are there clinical trials set up specifically for veterans?
Yes, there are clinical trials set up for veterans. The U.S. Department of Veterans Affairs explains how to search for them using ClinicalTrials.gov...
How do I use Clinicaltrials.gov?
Clinicaltrials.gov is a website sponsored by the U.S. government. It lists almost all of the current clinical trials both in the United States and abroad...
How do I use ResearchMatch.org?
ResearchMatch.org is a free service created by academic institutions, like universities, that conduct clinical trials. The goal of the service is to match volunteers with researchers that need them for their clinical trials...
How do I use Bolderscience.com?
Bolderscience.com makes searching the ClinicalTrials.gov list easier. It will give you the same search results as ClinicalTrials.gov but may be more user friendly. While the website was made for U.S. healthcare professionals,…
I understand that not everyone is chosen to participate in a clinical trial. How do I determine if I am eligible?
All clinical trials have specific guidelines about who can participate. After you agree to join a trial, you will be screened by clinical staff to ensure you are eligible...
What happens if I am not eligible for a clinical study?
It can be disappointing not to qualify for a clinical trial, but eligibility criteria -- the base requirements for participation -- are necessary to ensure the accuracy and safety of a study...
If I am eligible, who will contact me and who do they work for?
You will be contacted by a member of the clinical trial research team, typically the Research Coordinator. The Research Coordinator, who is often a nurse, serves as the liaison between patients and the researchers...
What to Expect During a Clinical Trial
If I’m considering enrolling in a clinical trial, what should I expect?
Some clinical trials involve visits to a study site, for evaluations by the investigator (e.g., doctor).  Other studies may allow you to be monitored at home using.  telemedicine (telehealth), mobile/local healthcare providers (HCPs) and…
What questions should I ask the people conducting the clinical trial?
Before deciding to participate in a clinical trial, you will meet with the trial's research team to learn about the study...
Am I able to participate in a clinical trial if I don’t live close to a trial site or cannot travel?
Many clinical trial programs offer patients options for participating in a clinical trial remotely, i.e., away from the main investigational site.
Will my care be better, the same, or worse if I participate in a clinical trial?
If you decide to participate in a clinical trial, you may receive higher quality medical care and resources...
What things could be done at my home for the trial?
A home visit may be conducted by a health care professional other than your doctor (i.e., a nurse or nurse practitioner, a physician assistant, or healthcare technician).  You could take a telemedicine (telehealth) call from your study doctor…
How will the clinical trial team communicate with me?
This will vary by study, but the study staff will go over this with you at the outset of the study.  It could involve regular visits to the investigational site, telemedicine (telehealth) visits, or other forms of communication via an app or…
How do I know if I am not receiving the experimental treatment in a clinical trial?
Generally, there are two types of clinical trials: Uncontrolled and controlled. In an uncontrolled clinical trial, all participants receive the same experimental treatment...
How will I get the study drug or intervention?
You may be instructed to pick up the study drug at site, or have it delivered to your home by a pre-specified courier or could be instructed to go to a pharmacy and receive study drug from a licensed pharmacist or pharmacy technician; this also will…
What support will be provided to me if I have questions about taking medication at home?
Clinical trial programs may deploy nurses, phlebotomists, or other licensed healthcare providers directly to your home to deliver treatments or collect samples if necessary...
Who pays for the treatment in clinical trials?
Individual study sponsors -- including pharmaceutical companies, medical institutions, and foundations -- typically pay for any treatments, special tests, or research costs specific to the clinical trial...
Will I get the results from my clinical trial?
Under the law, "basic results" for certain clinical trials must be submitted and published on ClinicalTrials.gov, generally no later than 1 year after the study Completion Date. (ClinicalTrials.gov) In many instances, study sponsors also share study…
Will my information be kept confidential?
Yes, your personal and medical information will always be kept confidential. The research team -- including doctors, nurses, social workers, and dietitians -- will collect your information using special records and computer programs...
What happens during and at the end of a clinical trial?
During a clinical trial, the patient's treatment team -- including doctors, nurses, social workers and other health providers -- will provide care in a hospital or clinical setting...
How will my doctor be involved before, during, and after a clinical trial?
In most cases, you will continue to see your primary care doctor while participating in a clinical trial. Most trials provide short-term treatment for specific illnesses or conditions but do not provide long-term care...
Help us Make our Website Better

We always want to make CTPoP better. Please send us your feedback about what you think. If you have written materials about clinical trials you would like us to use, you can send those too.