The primary purpose of this protocol is to create a registry of patients with plasma cell disorders (PCDs), including for example the cancer multiple myeloma (MM), who complete the assessment, previously known as a "geriatric assessment," as is outlined in this protocol. Secondary objectives include measuring the response rate to participation of patients in this study, assessing patient satisfaction with the questionnaire, and gathering information that would lend support for future research into these types of assessments in patients with PCDs. Additionally the study offers an optional blood draw to look at a genetic marker of aging called p16INK4a (IRB 15-1899, IRB 15-0244).
OBJECTIVES: Primary 1. To create a Registry (to be called the PCD Registry) of PCD patients 2. To have participating patients complete an assessment at enrollment and to repeat the assessment longitudinally over time. Secondary 1. To gather information, including patterns of patient care, that would lend support for future research in the PCD population. Specific research questions would be explored within separate IRB-reviewed protocols. 2. To bank blood samples for future research involving adults with PCD's, specifically examining p16INK4a and other markers to be specified in future, separate, IRB-approved protocols as specific research questions are identified. OUTLINE: Patients complete an assessment at baseline and then longitudinally over time which involves a multi-dimensional inter-disciplinary evaluation of a patient's functional status (ability to live independently at home and in the community), co-morbid medical conditions, cognition, psychological status, social functioning and support, medication review, and nutritional status. Patients' medical records are also reviewed.
Study Type
OBSERVATIONAL
Enrollment
2,000
North Carolina Cancer Hospital
Chapel Hill, North Carolina, United States
RECRUITINGCreation of a Registry of Plasma Cell Disorder (PCD) patients
Time frame: 10 years
Completion of baseline and longitudinal assessments in PCD patients
Time frame: 10 years
Creation of information that would lend support for future PCD research
Including patterns of patient care that would lend support for future research in patients with confirmed PCD's.
Time frame: 10 years
Response rates of assessment in PCD patients and their satisfaction with the assessment
Done by measuring: * percentage of patients contacted who consent to complete the assessment percentage of patients able to complete the self-administered portion of the assessment without assistance * the length of time necessary to complete the assessment * the variance and number of missing items * the percentage of geriatric assessments that contain all three of the following items: Timed Up and Go Assessment, Blessed Orientation-Memor Concentration Test, and the healthcare professional-rated Karnofsky performance status.
Time frame: 10 years
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