Quantifying the Net Patient Experience Through the First Global Net Patient Survey: a Collaboration Between the International Neuroendocrine Cancer Alliance and Novartis

Abstract

ABSTRACT Background: Neuroendocrine tumors (NET) are rare, heterogeneous cancers, not always well understood by the medical community or public. Over the last two decades the incidence of NET has increased and data on the impact of patients are outdated and inconsistently available around the world. The International Neuroendocrine Cancer Alliance (INCA), a network of charitable organizations and patient groups from 17 countries that aims to be the global voice in support of NET patients, and Novartis Pharmaceuticals have collaborated on the first global survey to gather data on the NET patient experience. The survey will provide important data from multiple countries, which will help to increase understanding of the needs and experience of NET patients, as well as differences and similarities between countries and regions, to help improve awareness and care. Trial design: The survey will gather information on NET patients' diagnostic experience, disease impact and management, interaction with medical teams, knowledge and awareness levels, and information sources. The survey, availablein eight languages, launched in February 2014 and will close May 31, 2014. INCA member organizations invited NET patients to participate in a 25-minute online, anonymous survey via flyers, website postings, e-mails and social media channels. Paper surveys were developed in several languages and distributed via patient groups and healthcare professionals to reach patients without access to social media. The data will be analyzed at global, regional and country-specific levels and any statistical differences at the 95% confidence level (P Disclosure: M. Sissons: Received grants for work (Novartis, Ipsen and Pfizer); J. Leyden: I disclose that I the Unicorn Foundation has been supported by Novartis Australia, Pfizer Austalia and Ipsen Austalia over the last 12 months for varied projects related to NET. All other authors have declared no conflicts of interest.