Tag Archive for: Clinical Study

What Do CLL Patients Need to Know About Clinical Trials?

What Do CLL Patients Need to Know About Clinical Trials? from Patient Empowerment Network on Vimeo.

What is a clinical trial and how does patient participation work? This animated video provides an overview of clinical trials, the process, and details key steps for engaging in your care.

See More from CLL Clinical Trials 201

Related Resources:

What Are the Types of CLL Clinical Trials?

CLL Clinical Trials: What Are the Phases?

Clinical Trials As a CLL Treatment Option: What You Should Know

Transcript:

 Dr. Singh:  

Hi, I’m Dr. Singh, and this is my patient, Elena, who is living with chronic lymphocytic leukemia, also called “CLL.”

And Elena is participating in a CLL clinical trial.  

Let me start by explaining what a clinical trial IS. Basically, it is a research study with human participants. And the goal of cancer clinical trials is to discover new and improved treatments to treat or to prevent cancer. 

At first, when I asked Elena if she would consider participating, she had a few hesitations.  

Elena:

Yes—even though I trust Dr. Singh, I still had questions. 

So, the first thing I asked was, what steps are taken to protect my safety if I participate in a trial? 

Dr. Singh: 

This is a common concern for many patients, and so I explained to Elena that each trial has a strict safety protocol, with set guidelines to protect patients. Beyond that, researchers are required to follow patient safety rules, which are enforced by the U.S Food & Drug Administration (FDA). At each study location, an institutional review board (or IRB) regularly reviews a study, and many trials are overseen by a group called a data and safety monitoring committee. 

And the trial team, which can include nurses and researchers, closely monitors the health of each trial participant regularly, all throughout the process. This is why clinical trials often require more visits and testing, and, in turn, a bigger commitment from that patient.  

Elena: 

After I felt more comfortable about the safety aspects, I asked Dr. Singh which clinical trial he would recommend for my CLL. 

Dr. Singh: 

That’s right. We discussed Elena’s available trial options, reviewed the pros and cons of each approach, as well as the logistics and potential financial impact. 

And it’s important to note that not every patient will qualify for every trial. Clinical trials have “eligibility requirements,” which can vary widely but may include factors like a patient’s age, health, and any prior treatments they have had.  

Elena: 

And there are several phases of clinical trials, right, Dr. Singh? 

Dr. Singh: 

Yes, exactly. The main phases are Phase I, II, III and IV. Each phase gathers valuable information about the treatment and helps measure its effectiveness.  

Elena: 

So, the main reason I joined a trial was to find out if a newer treatment could be more effective than the standard of care to treat my CLL. AND I wanted to help move cancer research forward for the CLL community. 

Dr. Singh: 

Exactly. Not every patient has the same reason for participation, but trials are essential for developing new and improved treatments for the future. 

Elena:  

I also learned that patients can leave a trial at any time or stage if they wish. 

Dr. Singh: 

That’s a great point, Elena.  

Now that you understand more about trials, how can you find out more? 

  • Start by asking your doctor if there are any trials that are available to you—and, if there is a specific trial that they recommend for you. 
  • If there is a trial that your team recommends, ask to discuss: 
  • The treatment approach used in the study and the purpose of the trial. 
  • The risks and benefits of participation. 
  • The financial costs, if any, and if there are assistance programs to help if you need it. 
  • The location of the trial and whether it can be coordinated with your local institution if it isn’t conveniently located—or, if transportation is available. 
  • How often you will need to go to the trial site and how long the trial will last. 
  • Finally, continue to educate yourself, using resources like clinicaltrials.gov. 

Elena: 

And visit powerfulpatients.org/CLL to learn more about clinical trials and CLL research. 

Dr. Singh: 

Thanks for joining us! 

Empowered #patientchat – IRBs and Me – Patients as Leaders in Research

You’re Invited! We hope you’ll join us for our next Empowered #patientchat as we discuss Institutional Review Boards (IRBs).

Institutional Review Board (IRB) is an appropriately constituted group that has been formally designated to review and monitor biomedical research involving human subjects. In accordance with FDA regulations, an IRB has the authority to approve, require modifications in (to secure approval), or disapprove research. This group review serves an important role in the protection of the rights and welfare of human research subjects.

IRBs are an important mechanism for protecting the rights and welfare of human research participants of a clinical study

We hope to see you Friday, September 21st on Twitter (or tchat.io/rooms/patientchat) at 10:00 am Pacific | 1:00 pm Eastern. Be sure to include the hashtag #patientchat in all your responses!

Guiding our discussion will be the following Topic Questions:

T1: What does the Institutional Review Board (IRB) do for the protection of human subjects in research? #patientchat

T2: Why is an Institutional Review Board (IRB) important? Tell us about your experiences, learnings, and findings. #patientchat

T3: What do you think are the impacts, if any, of IRBs on clinical innovation? #patientchat

T4: Should patients get involved in the IRB process? If so, how can they do so? #patientchat

T5: What measures should be implemented to improve the IRB process? #patientchat

BONUS: Do you think that n-of-1 trials need IRB review? #patientchat


Empowered Patient Chats (#patientchat) are held every other Friday at 10:00 am Pacific / 1:00 pm Eastern and during the chat patients and advocates come to learn from each other and discuss topics of interest to empowered patients.

Click HERE to learn more about the Empowered #patientchat Series plus read tips on how to participate.

I'll be at the Empowered #patientchat on Fri 9/21 at 10amPT | 1pmET. Join me! Click To Tweet

Clinical Trial Mythbusters -LIVE Webinar

Do Patients Have A Voice While Participating in a Clinical Trial?

 

For survivors Roberta Alberle and T.J. Sharpe and so many others, cancer was an unwelcome intruder that suddenly demanded their attention. Both became proactive and engaged, vocal patients, doing research about their treatment options and gaining access to clinical trials that made a HUGE difference. Join this LIVE interactive discussion as a panel of experts, including an oncologist, clinical trial navigator and patient advocates as they de-bunk myths around clinical trials.

Register to watch online on Wednesday, September 6, 2017 @ Noon Pacific (2:00pm Central; 3:00pm Eastern) for a 45-minute virtual webinar. You’ll also have the opportunity to get your questions answered by the panel. Send questions in advance to questions@patientpower.info.

Once you register, you will receive a confirmation email with details for joining the program at the scheduled time.

Tune in to learn:

  •       Do patients still have a voice during the clinical trial process?
  •       What is a clinical trial navigator?
  •       How can patients help their healthcare team be more effective in locating trials for them?
  •       More about clinical trial resources

View Speakers

Register Now

 

Clinical Trials Mythbusters – September 6 Stinger from Patient Empowerment Network on Vimeo.

I’ll be tuning into #ClinicalTrial Mythbusters Wed 9/6 3pmET. Join me! Click To Tweet

Clinical Trial MythBusters

Are Clinical Trials a Gamble for Me or My Loved One?

Is a clinical trial right for me or is it a gamble with my health? How will my loved one be affected? Do the risks outweigh the benefits? Join this live interactive discussion as a panel of experts, including an oncologist, trial coordinator and patient advocate as they debunk some of the myths around clinical trials. Listen to hear the patient voice and perspective for getting the best care-making decisions about clinical trials.

Watch online on Wednesday, June 21, 2017 @ Noon Pacific (2:00pm Central; 3:00pm Eastern) for a 30-minute virtual webinar. You’ll also have the opportunity to get your questions answered by the panel. Send questions in advance to questions@patientpower.info.

Once you register, you will receive a confirmation email with details for joining the program at the scheduled time.

Tune in to learn:

  •       What are common clinical trial myths?
  •       Why should patients participate?
  •       How can patients navigate the system?
  •       How can I or my care partner work with my medical team?

Register Now

View Speakers

Clinical Trials Mythbusters – June 21 from Patient Empowerment Network on Vimeo.

Tag Archive for: Clinical Study

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