About the survey
The goal of the Global NET Patient Survey was to increase understanding of the experiences, needs and challenges of NET patients, and provide insights and learnings between countries and regions to advance NET care on a global level1.
The Global NET Patient Survey was fielded between February 2014 and May 31, 2014, and included 1,928 patients from 12 countries1. The survey was made available in eight languages, and participating INCA member organizations invited NET patients to participate in the 25-minute online anonymous survey via flyers, website postings, emails and social media channels1. Paper surveys were developed in several languages and distributed at patient group meetings and through healthcare professionals to reach patients without access to the Internet. The data are being analyzed at the global, regional and country levels1.
The survey gathered information on the NET patient experience, including diagnosis, disease impact and management, quality of life, and knowledge and awareness levels. The quality-of-life results are the first data to be released and additional findings will follow.
The survey was developed through a collaborative effort between INCA and Novartis and was fielded by Hall & Partners USA, LLC, a research organization based in New York with offices around the world. Survey participation was voluntary and not subject to any compensation1.
Novartis provides innovative healthcare solutions that address the evolving needs of patients and societies. Headquartered in Basel, Switzerland, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, eye care, cost-saving generic pharmaceuticals, preventive vaccines, over-the-counter and animal health products. Novartis is the only global company with leading positions in these areas. In 2013, the Group achieved net sales of USD 57.9 billion, while R&D throughout the Group amounted to approximately USD 9.9 billion (USD 9.6 billion excluding impairment and amortization charges). Novartis Group companies employ approximately 133,000 full-time-equivalent associates and sell products in more than 150 countries around the world. For more information, please visit www.novartis.com
About the International Neuroendocrine Cancer Alliance (INCA)
The International Neuroendocrine Cancer Alliance (INCA) is a network of charitable organizations and patient groups from 14 countries that aims to be the global voice in support of people living with neuroendocrine tumors (NETs). The organization is dedicated to being the global advocate for NET patients and works toward a world where all NET patients get a timely diagnosis, the best care and ultimately a cure. For more information on INCA visit www.netcancerday.org. INCA is also on Facebook at NET Cancer Day, and on Twitter, @netcancerday.
- Novartis and INCA Global NET Patient Survey Report: Global Results. Data on File.
- National Cancer Institute. Dictionary of Cancer Terms: neuroendocrine tumor. Available at: http://www.cancer.gov/dictionary. Accessed October 2014.
- Yao, et al.One Hundred Years After “Carcinoid:” Epidemiology of and Prognostic Factors for Neuroendocrine Tumors in 35,825 Cases in the United States. J Clin Onc. 2008; 26:3063-72.
- Akerstrom, et al. Timing and extent of surgery in symptomatic and asymptomatic neuroendocrine tumors of the pancreas in MEN 1. Langenbecks Arch Surg. 2002; 386(8):558-69.
- Modlin, et al. Priorities for Improving the Management of Gasteroenteropancreatic Neuroendocrine Tumors. J Natl Cancer Inst. 2008; 100:1282-1289.
- Hage, et al. Update in Pulmonary Carcinoid Tumors: A Review Article. Ann Surg Oncol. 2003; 10:697-704.
- Mamikunian, et al. Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management: 4th ed. Available at http://www.interscienceinstitute.com/docs/Neuroendocrine-Tumors-4th-Edition.pdf. Accessed October 2014.