/On the Road with the LRG Patient Registry

On the Road with the LRG Patient Registry

By |2018-10-30T11:35:16+00:00December 16th, 2015|Advocacy, Newsletter, Patient Registry|
Michelle Durborow with Rodrigo Salas, LRG board member, at tenth annual ICORD meeting.

Michelle Durborow with Rodrigo Salas, LRG board member, at tenth annual ICORD meeting.

The tenth annual ICORD meeting was held in Mexico City on October 13-14 with the theme “A Decade of Discoveries and Current Challenges in the World of Rare Diseases and Orphan Drugs.” The meeting was part of the “Global Rare Diseases Week, Mexico 2015” and was back-to-back with the fourth Latin American meeting of Rare Diseases on October 12.

About 200 delegates from all continents and representing many different stakeholders such as patients, patient support groups, healthcare professionals, researchers, industry representatives, politicians, regulatory and health authorities came to take part in an inspiring program, to network and to share their experiences in the field of rare diseases and orphan drugs.

Michelle Durborow, LRG Director of Patient Registry presented in the session on Development and Accessibility to International Registries and Biobanks, on the importance of building a global GIST registry and tissue bank. The goal of this presentation was to raise awareness about GIST as a rare disease, to highlight the power of patient data and tissues in the research for treatments and to demonstrate how data can fill the gaps in understanding GIST. The other speakers in this session were Yaffa Rubinstein (NIH, USA), who presented about the NIH/NCATS GRDR® Program (Global Rare Diseases Patient Registry Data Repository) who spoke about linking patient registries data to bio-specimens data and Manuel Posada (Instituto de Salud Carlos III, Spain),  whose topic was medical ontologies and registering activities, what are their added values?

GIST Day of Learning at LRG Canada

GIST Sarcoma Life Raft Group Canada held its fourth GIST Day of Learning on Oct. 24, 2015 in Ottawa, Ontario.The event brought together patients, caregivers, advocates and researchers for a day of sharing valuable information, expertise and tools to support patients with GIST. Michelle Durborow, LRG Patient Registry Director was one of the speakers at this event, presenting about the how GIST patients, physicians and researchers can mutually benefit from the data gathered in the patient registry. The presentation entitled “The LRG Patient Registry: Research, Education and Support in Practice” illustrated the history of the registry and tissue bank and focused on practical examples of how patients can learn from the data to guide them in making informed decisions together with their physicians about their care.

From left to right: Doris McCormick, Andrea McCormick, Melissa McCormick, and Michelle Durborow

From left to right: Doris McCormick, Andrea McCormick, Melissa McCormick, and Michelle Durborow

SPAEN Annual Conference

spaen-logoSarcoma Patients EuroNet held its sixth Annual Conference for Organizations Representing Patients with Sarcomas, GIST and Desmoid Tumors on November 19-21, 2015 in Chantilly, France. The three-day conference was focused on research, treatment and access to treatment and advocacy/capacity building. Participants were sarcoma patient advocates and leading experts from different countries as well as pharmaceutical representatives who shared best practice examples, research updates and treatment options. Michelle Durborow, LRG Patient Registry Director, presented the survey tools and data collection to develop programs tailored to patients’ needs in terms of information on the possible impact of the generic versions of imatinib. This presentation was a follow-up from the Generic Task Force meeting that occurred in July, 2015 in Munich Germany.

Dr. Anette Duensing, Michelle Durborow, and Dr. Sebastian Bauer

Dr. Anette Duensing, Michelle Durborow, and Dr. Sebastian Bauer

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