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CANCER EXPERIENCE REGISTRY (CER)

CLINICAL RESEARCH ACCRUAL STUDY

IRB-approved web-based study designed by CSC to give a voice to the cancer experience. Participating hospitals enroll patients in the registry using unique licensed URL for patient tracking. They receive bi-annual annual aggregate reports on their patient population. Data used to apply for grants, manage budgets, staffing, and trending. Helps fulfill Commission on Cancer standard 9.1 (Clinical Research Accrual) and can help with 7.3 (Quality Improvement Initiatives).

Objective:

The Registry is an online initiative to understand the psychosocial experiences of cancer patients/survivors and their informal or family caregivers. The registry documents insights from patients and caregivers across the cancer experience spectrum, illuminates key areas that impact patients’ and caregivers’ lives and informs diverse stakeholders looking for data-driven care solutions and broad system change.

Specific Aims include:

  • To assess the psychosocial experiences and needs of people who have been impacted by cancer, including patients, survivors and caregivers

  • To explore differences among cancer types regarding psychosocial experience

  • To assess differences in psychosocial experience according to the trajectory of care

Research Design and Format:

  • The Registry is a prospective observational study completed on a web-based platform

  • Once registered, patients/survivors and caregivers are invited to complete a core set of questions via an online survey. For several cancer types, there are additional cancer-specific questions embedded within the core set of questions to explore unique or cancer-specific concerns (e.g., breast cancer, multiple myeloma)

  • Caregiver participants are invited to answer separate questions relevant to the caregiving experience

  • Each survey takes approximately 45-60 minutes to complete; participants can save their survey before completion and return to finish at a later date/time

Human Subjects:

  • Only eligible participants who agree to participate will be included in this study

  • The PI and sub-investigators are certified in the protection of human subjects

  • Registrants must complete a consent form to participate in the Registry survey

  • Eligibility criteria include (1) anyone who has been diagnosed with cancer at any point in time in their life, OR (2) anyone who is or has been a family caregiver or informal caregiver for someone diagnosed with cancer; (3) 18+ years of age, and (4) ability to read and understand English

Informed Consent:

  •  Participants who join the Registry are provided a description of the study and are asked to provide consent by checking an acceptance button prior to completing the online survey.


CORE SURVEY CONTENT:

  • Demographics

  • General health and diagnosis

  • Genetic/Biomarker testing

  • Cancer treatment experience

  • Oral medication experiences

  • Quality of life

  • Side effects and symptom management

  • Cancer-related distress

  • Lifestyle information

  • Social support

  • Treatment decision-making

  • Treatment plan

  • Communication and care coordination

  • Clinical trials

  • Survivorship care planning

  • Financial impact

  • Work-related issues

  • Social security/Insurance coverage

 

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