International Patient Meeting Report - August 2013, Miami, USA
A Gastro-Intestinal Stromal Tumour is rare, but you are not alone!
New Horizons makes a splash in Miami
Kindly prepared by Diana Nieves.
The 2013 New Horizons GIST conference was held at the Hilton Miami Downtown Hotel in Miami, Florida from Wednesday, June 5th to Friday, June 7th.
The conference was chaired and planned by a steering committee of nine members listed below:
- Anna Costato, A.I.G. Associazione Italiana GIST Onlus (Italy)
- Barbara Dore, GIST Support UK & Sarcoma Patients Euronet (UK)
- Maria Isabel Gomez, ASAPHE (Venezuela)
- David Josephy, GIST Sarcoma Life Raft Group (Canada)
- Vicky Ossio, Alianza GIST (Bolivia)
- Ginger Sawyer, GIST Support International (USA)
- Norman Scherzer, The Life Raft Group (USA)
- Markus Wartenberg, Das Lebenshaus (Germany)
- Martin Wettstein, Swiss GIST Group (Switzerland)
There were a total of 38 participants who included 22 patient representatives (including eight Steering Committee Members), ten speakers, four pharmaceutical representatives, and two onsite logistics staff. The conference was sponsored by Novartis, Pfizer and Bayer Pharmaceutical companies. We also received product donations from Topline Products, Udderly Smooth and Philosophy, which were distributed to the participants during the conference.
The main topic of this conference was the clinical trials process.
To ensure that all conference participants had some basic knowledge of the clinical trials process, the steering committee provided a Clinical Trials 101 workshop led by Jerry Call, Science Director and Jim Hughes, Clinical Trials Coordinator, both from the Life Raft Group. Participants were sent a Clinical Trials 101 PowerPoint presentation and were then given the opportunity to login into an Adobe Connect online meeting module for a Question & Answer Session with the presenters on May 1, 2013. Participants were also sent various articles on the clinical trials process and a pre-conference homework assignment to complete on the landscape of the clinical trials process within their country.
The first day of the conference began with a welcome lunch followed by warm welcome remarks from Anna Costato, Steering Committee member. She introduced Dr. Peter Reichardt who provided a medical presentation on current care management of GIST. All the participants were very engaged in the presentation had many questions that Dr. Reichardt was able to answer. A GIST clinical trials perspectives discussion then took place by a panel of doctors representing two pharmaceutical companies, Dr. Peter Larson of Novartis and Dr. Ewa M. Matczak of Pfizer. Steering Committee member, David Josephy, moderated the panel asking questions on various topics such as the latest developments on new drugs for GIST, the availability of generic imatinib in many countries and the impact on clinical trials, and pharmaceutical companies pro-active steps to encourage early and active participation in patient advocacy groups in the clinical trials process.
Soon after the pharmaceutical panel discussion, Louise Binder, a Clinical Trials expert from the HIV/AIDs community, also provided her perspective on the clinical trials process encouraging and empowering patient representatives on the various issues and how they can take action to create a better process. Ms. Binder focused her talk on patients creating relationships with researchers, manufacturers and prescribers in the field in order to become better educated and prepared to advocate on behalf of GIST patients with government health policy officials. The day ended with a wonderful dinner at La Loggia Restaurant in downtown Miami.
Thursday, June 6, the day began with a presentation by Dr. Jonathan Trent, who provided an overview of new GIST treatments and GIST clinical trials as they were discussed during the recent 2013 ASCO conference held in Chicago, Ill. Dr. Trent also talked about the regulatory process of clinical trials. He identified the challenges of keeping clinical trials affordable as requirements and regulatory developments change all the time. Dr. Trent also discussed the clinical trials process study protocols, how trial sites are selected and how protocols are outlined in the operations manual. Following Dr. Trent’s presentation was Jim Hughes, who also provided his wealth of knowledge and experience with the clinical trials process.
Best practices sessions were also given by Piga Fernandez of Alianza GIST, Erin Schwartz of The MAX Foundation, and Roberto Pazmino of the Life Raft Group, as well as a session on the Patient Involvement in Clinical Research led by Steering Committee member Markus Wartenberg as part of the conference. Also, Dr. Anette Duensing provided a research update to the group including some history and a summary report of the Life Raft Group’s Research Team on GIST.
The rest of Thursday, June 6 and most of Friday, June 7, the participants were engaged in group exercises and discussions facilitated by Bob Chapman of American Cancer Society and Cristina Parsons Perez of Catalyst Consulting Group, on the clinical trials process from a global snapshot and worked towards common resolutions. The group created a motto: “We, New Horizons as a global GIST community, believe that: Every GIST patient, regardless of geo location, resources, has access to us.”
They also identified some goals and tactics that the New Horizons GIST community could undertake in the following years and a S.W.O.T. (strengths, weaknesses, opportunities and threats) analysis that would assist them in their efforts to better engage the Global GIST community with regard to the clinical trials process.
Closing remarks were made by Anna Costato, at the end of the conference who thanked everyone for being engaged and empowered to work together.