CF Foundation | Informed Consent and How Your Safety is a Priority скачать в хорошем качестве

CF Foundation | Informed Consent and How Your Safety is a Priority

This town hall is intended to educate the cystic fibrosis community about how patient safety and privacy is protected in clinical trials, what is involved with the informed consent process, and what it’s like to participate in a clinical trial. This is the first in a four-part series of regional cystic fibrosis research town halls, put on by the Southeast Research Collaborative. The collaborative is made up of several research centers throughout the South, which are committed to assisting with referrals for clinical trials and promotion of CF research throughout the region. Originally recorded August 24, 2023. 00:00 | Informed Consent and How Your Safety is a Priority 05:40 | What are the challenges of informed consent? 09:14 | How can I find information on clinical trials? 10:05 | What is the process for informed consent? 12:55 | How is patient safety protected during clinical trials? 15:15 | Joe Bufi, an adult with CF, describes his experience participating in a clinical trial in another state 22:21 | How did you balance the need for altruism and direct benefit for yourself when deciding to participate in clinical trials? 25:26 | Did you feel like your safety was being protected while you were participating in clinical trials? 27:32 | How is the patient voice heard during the development of the protocol and execution of a clinical trial? How is that beneficial for patient safety? 32:49 | How do you account and prepare patients for theoretical, unknown risks in a study? 38:35 | Joe discusses how he would assess and come to terms with the unknown risks in a study 41:21 | What should you think about while reviewing an informed consent form? 43:43 | How do you ensure that there is a proper informed consent process? 47:22 | How would you rectify it if someone said they didn’t understand the science being tested in the clinical trial, but still wanted to participate? 52:40 | What should people with CF do to overcome their initial concern about participating in a clinical trial for the first time?