Hello Kieran, I wanted to respond on behalf of Dr. Trivedi and UTSW. We are not clear if a representative from our ALS clinic site is to attend? If so, Dr. Trivedi's schedule will not permit her to attending the meeting. If a representative from our site is needed, I will be happy to attend on behalf of her and UTSW. Best, Nina F. Gorham, CCRP Clinical Research Coordinator UT Southwestern Medical Center Department of Neurology and Neurotherapeutics Neuromuscular Disorders
From: [email protected] [mailto:[email protected]] On Behalf Of Kieran Pemberton Sent: Thursday, July 10, 2014 6:17 PM To: [email protected] Cc: Kittrell, Pamela P ([email protected]) Subject: GPC LEK travel, registration details & instructions The Greater Plains Collaborative Learning Engagement Kickoff (GPC LEK) August 17-18, 2014 Information below and (same as attached): - Outline of events - Travel arrangements - Travel costs - Registration - More information TENTATIVE OUTLINE OF EVENTS Sunday August 17, 1-5pm Learning Engagement Bootcamp * Goal for the Day: Educate patients/patient advocates on PCORI, GPC, clinical effectiveness research, and data sharing. * Participants will share their experiences and learn how they will play a role in the GPC's efforts. * Lunch provided (Cupini's Italian Food<http://www.cupinis.com/?page=Home>) if requested in registration Attendees: Patient representatives, patient advocates, caregivers, GPC site community engagement representatives. Note: others are welcome to attend this session, but should act as observers/listeners only. Sunday Basic Agenda (tentative): 1-2pm Welcome and Orientation to the Day 2:15-3:30pm Patient/Research Participant Experience open discussion 3:45-4:15pm Cohort Characterization discussion (ALS, breast cancer, weight cohorts) 4:15-5pm Approaches to Research Methods discussion (surveys, interviews, other) Discussions and activities are geared towards understanding the patient/research participant perspective and toward empowering Bootcamp participants to participate more fully in Monday's activities. A more detailed agenda will be provided at a later date. Sunday, 6:30pm Dinner - Fiorella's Jack Stack Barbecue<http://www.jackstackbbq.com/jack-stack-freight-house.aspx> All are invited to join for BBQ. Please be sure to note on your registration form if you have dietary restrictions. Monday, August 18, 7am-5pm Learning Engagement Kickoff * GPC working groups, including cohorts, methods, data sharing & governance will have sessions. * Patient Engagement Bootcamp attendees will learn more about comparative effectiveness research and join the working groups to provide patient perspectives. * Light breakfast and lunch provided Attendees: Patient representatives, patient advocates, caregivers, GPC site community engagement representatives, cohort working group members, methods working group members, data sharing & governance working group members Monday Basic Agenda (tentative): 7-8am Bagels and coffee 8-8:45am Introduction 9-10:30am Breakout Sessions (A1) Cohort Characterization (A2) Methods (B1) Comparative Effectiveness Research (CER) in the Patient Experience (B2) Data Sharing Agreements (DSA) and Data Governance (C) Phase 2 Proposal Planning SWAT Team 10:30-12:15 Morning breakout session synthesis 12:30-1:30 Working lunch (provided) and presentations from morning sessions 1:45-2:45 Breakout Sessions (A1) Cohorts - Survey deployment (A2) Methods (B1) CER in the Patient Experience (B2) DSA - action plan draft, data sharing to support trials (C) Phase 2 planning 3-4pm Afternoon breakout session synthesis 4-5pm Final discussion, next steps, wrap-up A more detailed agenda will be provided at a later date. TRAVEL ARRANGEMENTS Attendees are responsible for making their own travel arrangements. Arrival * Sunday Bootcamp attendees arrive for 1pm start (allow 40 minutes for travel from airport) Indicate on the registration form if you'd like a boxed lunch. * All other attendees may arrive any time Sunday, August 17, keeping in mind an all-LEK dinner begins at 6:30pm if you would like to join us Departure * The LEK is planned to conclude at 5pm on Monday. However, break-out sessions are planned to conclude at 2:45, with the remaining time for group synthesis and discussion, so late afternoon flights may be possible. The airport is about 40 minutes from KUMed Center. Kansas City International (KCI) Airport<http://www.flykci.com/> KCI Ground Transportation<http://www.flykci.com/Direction/GroundTransportation/Index.htm> Hotel Rooms have been reserved at two area hotels: * Holiday Inn Express KC and KU Medical Center<https://secure3.hilton.com/en_US/hp/reservation/book.htm?execution=e1s1>: $94/night, ask for GPC room block. Complimentary breakfast. This hotel is across the street from the KUMC campus. A GPC mini-shuttle will be provided for dinner on Sunday. * 816 Hotel<http://www.816hotel.com/>: $84/night, ask for GPC room block. Complimentary breakfast. 1 mile from KUMC and 3 miles from the Sunday dinner location. Hotel provides a shuttle service for locations in a 4-mile radius. If you are staying with family or friends during your stay, please indicate on the registration form if you will need assistance with transportation. Parking If you plan to drive to LEK events, please indicate this on your registration form. We will provide details on parking on campus closer to the event date. TRAVEL COSTS Costs are to be covered from individual site travel budgets. GPC leadership has established that all patients/patient advocates/research advocates will receive a $200 honorarium in addition to reimbursement for their travel expenses (also from site budgets). REGISTRATION<https://redcap.kumc.edu/surveys/?s=m4gKSAP3Kg> All attendees should complete a LEK Registration Form. It should be completed after you have made your travel arrangements as we ask for arrival/departure and hotel details on the form<https://redcap.kumc.edu/surveys/?s=m4gKSAP3Kg>. MORE INFORMATION Greater Plains Collaborative<http://www.gpcnetwork.org/> Patient Centered Outcomes Research Institute<http://www.pcori.org/> The National Patient-Centered Clinical Research Network<http://pcornet.org/> Questions? Email: [email protected]<mailto:[email protected]>, [email protected]<mailto:[email protected]> ________________________________ UT Southwestern Medical Center The future of medicine, today.
_______________________________________________ Gpc-als mailing list [email protected] http://listserv.kumc.edu/mailman/listinfo/gpc-als
