over 5 years ago
Thanks for supporting the Clinical Trial Visualization Redesign Challenge! Are you planning to enter a submission, but not totally sure how clinical trials work?
If so, read through the first half of our two-part guide on clinical trials: 10 things you didn’t know about CTs. This email contains questions 1-5. Stay tuned for questions 6-10!
10 things you didn't know about clinical trials — part one
Are there clinical trial communities (forums, support groups, etc.)? Do patients ever interact with each other?
Yes, there are clinical trial communities, but the level of interaction varies by patient. Generally speaking, most patients do seek out support communities before, during and after the study. Some communities are primarily for logistics and emotional support, while others exist to support technical or study-specific operations. During a study, patients do interact with each other, but they’re required to maintain the confidentiality of the study, as outlined in the Informed Consent document they sign.
Are side effects ever specific to one gender or one age group? If so, is that data shared with the patient at the time they join the clinical trial?
Yes, known side effects — also called adverse events — are disclosed in the Informed Consent. When side effects are specific to a particular group, they are mentioned. Generally, though, if patients fall into one of the affected groups, they are often excluded from the trial (meaning they are not allowed to enter).
What is the procedure before patients get the clinical trial information package? Do they receive communications from their doctor(s)?
This varies according to a patient’s local health system. Generally, patients consider a clinical trial when their existing standard of care doesn’t meet their needs. A local doctor generally refers a patient to specialists, who then explore advanced treatments or clinical study. Patients are provided with general trial information (i.e. “what is a clinical trial?”) as well as the specific Informed Consent for a candidate trial. They’re allowed to take this information home with them to review and consult with family and friends. Often, they’ll also seek additional information online and find patient communities of their specific disease before entering a trial.
Does every study have a placebo group and a control group?
No. Both depend on the design of the study. Placebo controlled studies are common, however in diseases with well established treatments, the control group is often considered a patient’s standard of care. There are also studies that are not Randomized Control Trials (RCTs), such as observational studies. This site provides a nice summary of clinical study types: http://www.vetmed.wsu.edu/courses-jmgay/glossclinstudy.htm
Does Eli Lilly have "open" clinical trials (for the patient to self-actualize) or do all patients come through a doctor’s referral?
Generally patients enter studies on referral from their doctor. But sometimes, such as in the case of a rare disease, patients will become very knowledgeable about their condition and will initiate the discussion with their doctor. There’s also an increasing number of “trial finder” solutions on the internet, many of which are targeted to patients.
As always, we’re here to help. If you have a question about the Clinical Trial Visualization Redesign, or about clinical trials in general, post in the Discussion Forum or shoot us an email at firstname.lastname@example.org.