Great summary of first plenary at NACFC today:
https://www.cff.org/CF-Community-Bl...-Pushing-for-Treatments-for-Everyone-With-CF/
https://www.cff.org/CF-Community-Bl...-Pushing-for-Treatments-for-Everyone-With-CF/
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NACFC Plenaries
- Thread starter jricci
- Start date
Summary of second plenary at NACFC:
https://www.cff.org/CF-Community-Bl...-CF-Community-Effort-to-Advance-CF-Therapies/
Emphasis on importance of clinical trial participation:
"...However, as exciting as it to have the most clinical trials for CF underway ever, enrollment is a serious challenge, Dr. Flume said. With only 33,000 people with CF in the United States, it is difficult to recruit enough people who meet all the eligibility criteria for a trial.".....
"In an effort to expand the pool of people who can enroll in trials and accelerate drug development, the CF Foundation is also focusing on helping the performance of clinical trials in the United Kingdom, Europe and Australia. These countries have diverse concentrations of people with specific CF mutations, making it easier to find people who are eligible for certain trials...The European Cystic Fibrosis Society region alone represents people with 1,300 different CF mutations."....
"We need global participation to advance as fast as possible.”
https://www.cff.org/CF-Community-Bl...-CF-Community-Effort-to-Advance-CF-Therapies/
Emphasis on importance of clinical trial participation:
"...However, as exciting as it to have the most clinical trials for CF underway ever, enrollment is a serious challenge, Dr. Flume said. With only 33,000 people with CF in the United States, it is difficult to recruit enough people who meet all the eligibility criteria for a trial.".....
"In an effort to expand the pool of people who can enroll in trials and accelerate drug development, the CF Foundation is also focusing on helping the performance of clinical trials in the United Kingdom, Europe and Australia. These countries have diverse concentrations of people with specific CF mutations, making it easier to find people who are eligible for certain trials...The European Cystic Fibrosis Society region alone represents people with 1,300 different CF mutations."....
"We need global participation to advance as fast as possible.”
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Nope- I wasn't there-- just tried to keep up with everything online if I could. Unfortunately, CF patients aren't invited to attend because of the CFF's infection control policy.
Here are recordings of all the plenaries. I've watched the first two so far. The message of hope is so powerful it sent chills up my spine. We still have a long road ahead before all those with CF have a very effective treatment that addresses the underlying cause, but the progress that has been made in the last few years and the progress that is expected in the coming years is truly incredible.
They are lengthy recordings, but will definitely be worth your time.
2016 NACFC Plenary #1:
https://youtu.be/yaCWm8DLHo4
2016 NACFC Plenary #2:
https://youtu.be/s9Y99JecbGA
2016 NACFC Plenary #3:
https://youtu.be/l53Tu1_WHSw
Here are recordings of all the plenaries. I've watched the first two so far. The message of hope is so powerful it sent chills up my spine. We still have a long road ahead before all those with CF have a very effective treatment that addresses the underlying cause, but the progress that has been made in the last few years and the progress that is expected in the coming years is truly incredible.
They are lengthy recordings, but will definitely be worth your time.
2016 NACFC Plenary #1:
https://youtu.be/yaCWm8DLHo4
2016 NACFC Plenary #2:
https://youtu.be/s9Y99JecbGA
2016 NACFC Plenary #3:
https://youtu.be/l53Tu1_WHSw
I´ve seen 2 of the plenaries so far and I agree it´s inspiring! I especially liked the speach by the young dutch researcher Gitte Berkers on organoid in vitro testing. I hope organoids will be used to speed up drug testing and research and help us with rare mutations to access drugs too.