"01-21-2015" Minutes

ACFAC Minutes 01-21-2015

Members Present: Brian, Devin, Angel, Colleen, Ed, Annette, Shawn, 

Members Absent: Victoria, Lauren, Monica, Jay

Guest: Karen

Council Votes: December Minutes Approved

Project Updates:

CF Research Update: Colleen updated the council on the new and exciting studies happening at Stanford. There are a fair number of Vertex research trials taking place this year. One of the Phase 3 Vertex studies is following the long-term effects of Ivacaftor and lumacaftor, the VX809 Compound. In addition, they are running a Vertex study looking at the 661 compound and Ivacaftor, which is closed to enrollment.  It was just announced today that Stanford has been chosen to participate in Phase 3 Vertex study looking at Ivacaftor in combination with VX-661. This is good news for patients with mutations other than the F508/F508 mutation. This study will recruit some of the untapped cf population. Just recently the FDA approved Ivacaftor for CF patients with the mutation R117-H. There are also other non-Vertex studies starting up looking at correcting CFTR protein. These are all early phase studies which will be starting up soon. As a reminder: the research team does a database search when a new study is starting, they then find patients that "fit" the protocol defined inclusion and exclusion criteria. Once they've identify potential participants, the research team contacts those who meet criteria. As always you can reach out to Colleen if you have questions or are interested in a study! Colleen's number: 650 736-0388.  To find out more about CF Research Clinic Trails going on and updated information please visit the Stanford CF Clinic website at http://cfcenter.stanford.edu/

Coordination with CFF and external clinic development: After attending the virtual  innovation two day CF Care Model Design meeting, Shawn reported to the council goals and topics that were discussed. The main goal: To Cure CF. There are several groups focusing on individual goals: ways for patients to stay out of the hospital, and making sure patients do not feel alone or helpless. General discussions looked at ways to improve communication between staff and patient  Estimated completion of the project is sometime after September. Shawn will keep the council updated on any new information. If you are interested in finding out more about this project you can check it out on the web at http://c3nproject.org/

MyHealth Update: Christian from MyHealth is starting back up in mid-January. No further updates at this time. 

Facebook Meetings: No meetings have taken place at this time. Brian will follow up to see if any meetings will be scheduled in the future. 

Clinic - Patient Opportunities: Elika will write up an insert to be published in the March Newsletter regarding the topic of Baseline Determination. Angel will keep a running list of general questions the council presents during the meetings or topics arising on the facebook page. She will then distribute the question to the appropriate parties and track the completion of questions.  

Return Patient Questionnaire Form: Follow up with Jay at next meeting

Council Website: Follow up with Jay at next month meeting.

 

Action Item Follow Ups from Previous Meeting:

Elika: Will write up an insert to be published in the March Newsletter regarding the topic of Baseline Determination

Elika: Sent out an email to other NP groups who use The Return Patient Question Form to see what they find useful. Due to the holidays she did not receive any responses back. She will resend and research and report back to the council. 

Jennifer spoke with the CF clinic manager and it is ok to place the councils brochures at the front desk. She is also still waiting on a response back from MyHealth regarding her email issues. 

Brian sent Lauren an invite to the Facebook Page.

Action Item: 

• Brian: Work with Colleen on creating a profile for the Facebook page.
• Angel: Inform Colleen of how many cfers will be in the room during a council meeting so she can supply masks, and hand gel. 
• Colleen: Email Brian or Angel,  Dr. Milla's Vest Cycling Procedure. Post the procedure on the Facebook page. 
• Angel: Will keep a running list of general questions the council presents during the meetings or topics arising on the facebook page. 
• Devin: Follow up with Elika about insert in March's Newsletter regarding Baseline Determination, and posted on the Facebook Page. 
• Brian: Follow up with Joan about attending the next council meeting. 

 

Meeting called to a close at 6:00pm

Next Council Meeting February 18, 2015