Summary

Eligibility
for people ages 21 years and up (full criteria)
Location
at UC Davis
Dates
study started
estimated completion
Principal Investigator
by Luis Carvajal-Carmona, PhD (ucdavis)

Description

Summary

The objectives of the proposed study are to develop and evaluate protocols for ethnic/racial minority-specific research using cancer registry data. In conjunction with the Cancer Registry of Greater California (CRGC), the investigators have developed procedures to identify, recruit, and survey ethnic/racial minority patients with MM. To pilot the study, the investigators aim initially to test the feasibility of this protocol by contacting 400 eligible patients (100 African Americans, 100 Latinos, 100 Asian American/Native Hawaiian/Pacific Islander-AANHPI and 100 non-Hispanic Whites as a comparison group) to conduct a pilot survey through which will ascertain etiological and survival-related factors for MM. Ultimately, the investigators hope the findings from this pilot will yield insight into the best practices for recruiting minorities with MM and serve as the basis for larger population-based studies of MM etiology and survival.

Details

Eligible patients will include African Americans, Latinos and AANHPIs who were diagnosed with a first primary, pathologically confirmed MM within the previous five years and who were at least 21 years of age at the time of diagnosis. Investigators will also include, as a comparison group, non-Hispanic White patients. Patients must have been diagnosed in one of the 48 counties of California. Patients must be alive at the time of study and able to provide informed consent. The research team will not include those who are unable to consent, pregnant women, or prisoners. Initially, investigators will randomly select 100 eligible patients from each race/ethnicity mentioned above to participate in the pilot study. Once the pilot is completed, the investigators will aim to contact all eligible patients reported to the Cancer Registry of Greater California (CRGC) until 2024. Drs. Carvajal-Carmona and Cress have coordinated with MEDULLA investigators and CRGC research staff to develop a questionnaire for racial/ethnic minorities with Multiple Myeloma. The survey focuses on demographics, risk factors, cancer treatment, quality of life, and social determinants of health. All survey items are adapted from previously tested and validated surveys. The survey is expected to take approximately 30-45 minutes to complete. CRGC staff, under Dr. Cress supervision, will identify eligible participants using the criteria described above based on diagnostic information in the CRGC database. The research team will be following California Cancer Registry policies and procedures for release of data. CRGC staff will extract patients contact information from the registry and will provide this information to research staff at UC Davis, who will work under Dr. Carvajal-Carmona's supervision. The UC Davis Research team will initially mail each eligible participants a postcard and a survey study packet that will include: 1) Simple instruction sheet 2) An introductory letter that details the study 3) Information sheet that details on informed consent 4) Survey instruction sheet 5) A paper copy of the survey 5) Incentive selection sheet and option to continue to the second part of study 6) Brochures about the cancer registry and the UC Davis Comprehensive Cancer Center, and return pre-paid envelope.

Keywords

Multiple Myeloma Neoplasms, Plasma Cell

Eligibility

You can join if…

Open to people ages 21 years and up

  • Diagnosed with a first primary pathologically confirmed case of Multiple Myeloma within the previous 5 years
  • At least 21 years of age at the time of diagnosis
  • Must have been diagnosed in one of the 48 counties in California
  • Participant must be alive
  • Identify as one of the following: African American, Latino, Asian American/Native Hawaiian/Pacific Islander, Non-Hispanic White

You CAN'T join if...

  • People who have not been diagnosed with Multiple Myeloma
  • Under the age of 21
  • Pregnant
  • Prisoner

Location

  • University of California Davis Comprehensive Cancer Center accepting new patients
    Sacramento California 95817 United States

Lead Scientist at UC Cancer

  • Luis Carvajal-Carmona, PhD (ucdavis)
    Professor, Biochemistry and Molecular Medicine. Authored (or co-authored) 87 research publications.

Details

Status
accepting new patients
Start Date
Completion Date
(estimated)
Sponsor
University of California, Davis
ID
NCT04314752
Study Type
Observational [Patient Registry]
Last Updated