CF Foundation | All About the Southeast CF Research Cooperative and Clinical Research Referral скачать в хорошем качестве

CF Foundation | All About the Southeast CF Research Cooperative and Clinical Research Referral

This town hall is intended to educate the cystic fibrosis community about the Southeast CF Research Cooperative (SERC) and the referral process for clinical trials. This is the second in a four-part series of regional cystic fibrosis research town halls to familiarize the CF community with the clinical trial process, how clinical researchers protect participants’ safety and privacy, new areas of CF research, and how people with CF can get involved. The town hall was hosted by SERC, which is made up of several research centers throughout the South that are committed to assisting with referrals for clinical trials and promotion of CF research throughout the region. Originally recorded September 7, 2023. 00:00 | All About the Southeast Cystic Fibrosis (SERC) Research Cooperative and Clinical Research Referral Process 04:12 | What is the CF Therapeutics Development Network? 06:18 | What area is covered by the SERC? 08:48 | What is the purpose of the SERC? 11:36 | What has the SERC done so far? 14:22 | How do I learn more about clinical trials? 15:19 | What to expect when joining a referral study: Logistics, Travel, Communication, and Safety 15:32 | What is a referral study? 16:10 | What are the purposes and goals of referral studies? 18:00 | How do referrals work? 18:35 | How would I find out about a referral study? 19:47 | Who would I talk to about study details? 24:28 | What is prescreening? 26:39 | How does travel work? 29:43 | What else should I expect while I’m in the trial? 31:25 | How will the trial site and my care site communicate during the study? 35:37 | Nancy King, an adult with CF, talks about her experience being referred to an out-of-state clinical trial 43:40 | Was this the first time you participated in a research study and how did you overcome your concerns about participating? 45:24 | What resources have you found to be helpful to connect you with referrals? 46:37 | Did you reach out to your own team before you reached out to the study team? 47:48 | What resources would the speakers recommend for people looking for trials that match their mutations or other criteria? 51:25 | Can you talk about exclusion and inclusion criteria for studies, such as age limits? 55:40 | Can you give your advice to people with CF or their families who are considering getting a referral for a study outside their site or participating in research for the first time?