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Hui Huang

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    P1.15 - Treatment in the Real World - Support, Survivorship, Systems Research (Not CME Accredited Session) (ID 947)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 1
    • Moderators:
    • Coordinates: 9/24/2018, 16:45 - 18:00, Exhibit Hall
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      P1.15-16 - ALKConnect: An Anaplastic Lymphoma Kinase Positive (ALK+) Non-Small Cell Lung Cancer (NSCLC) Patient Insights Network (ID 12967)

      16:45 - 18:00  |  Author(s): Hui Huang

      • Abstract
      • Slides


      ALK+ NSCLC is a subset of NSCLC present in ~3-5% of NSCLC patients. Little is known about ALK+ NSCLC patients’ unique journeys, their perspectives on the burden of disease, and their ‘real-world’ treatment experiences. Online patient networks provide opportunities to gain valuable insights into outcomes meaningful to patients, directly from patients. The objective of this study is to develop an ALK+ NSCLC patient network to facilitate patient interaction and to conduct patient-centered research including understanding unmet needs, patient preferences, health-related quality of life (HRQoL), and product differentiation.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      The ALKConnect Patient Insights Network ( will be a patient-focused registry that directly collects information from patients living with ALK+ NSCLC. Patients meeting study criteria will be enrolled in the online survey over a 2-year period. Inclusion criteria are US, adult, English-speaking patients with ALK+ NSCLC providing written, informed consent, internet access, and willing to answer regular e-surveys. Retrospective and cross-sectional ‘real-world’ data that will be collected include demographics, clinical characteristics including ALK+ NSCLC disease history and status, comorbidities, past and present treatment experiences and outcomes, quality of life, patient preferences, healthcare resource use, and work productivity. Supplementary data may be collected through uploading of electronic medical records.

      4c3880bb027f159e801041b1021e88e8 Result

      The ALKConnect Patient Insights Network will systematically characterize the natural history of ALK+ NSCLC and its treatment and the overall impact on patients. The data collected will be reported descriptively for the population overall and by subgroups of interest (e.g., age, sex) where sample sizes permit. The associations between treatment history/disease status and patient-reported outcomes including symptom severity, HRQoL (e.g., responses to the MD Anderson Symptom Inventory lung cancer module [MDASI-LC]), healthcare resource use, and work productivity will be analyzed. Longitudinal trends will be evaluated to enable a better understanding of the impact of ALK+ NSCLC over time. All de-identified information gathered from ALKConnect will be shared with the ALK+ NSCLC community, including patients, caregivers, healthcare professionals, advocacy organizations, and fellow researchers.

      8eea62084ca7e541d918e823422bd82e Conclusion

      We present ALKConnect, an online ALK+ NSCLC patient insights network directly from patients. ALKConnect will provide patients with ALK+ NSCLC opportunities to share their treatment experiences, disease burden, HRQoL, and preferences. Through dissemination to scientific and medical communities, researchers will gain first-hand insights into ALK+ NSCLC patients’ experiences of care, and into opportunities for addressing patients’ unmet needs.


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