A Study to Evaluate Collecting of Health Related Quality of Life Data in Newly Diagnosed AL Amyloidosis Patients


  • Study type

  • Study IDs

  • Describes the nature of a clinical study. Types include:

    • Observational study — observes people and measures outcomes without affecting results.
    • Interventional study (clinical trial) — studies new tests, treatments, drugs, surgical procedures or devices.
    • Medical records research — uses historical information collected from medical records of large groups of people to study how diseases progress and which treatments and surgeries work best.
  • Site IRB
    • Rochester, Minnesota: 16-006866
    Sponsor Protocol Number: 16-006866

About this study

The purpose of this study is to evaluate the usefulness of collecting health related quality of life data on newly diagnosed AL amyloidosis patients.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. If you need assistance understanding the eligibility criteria, please contact the study team.

See eligibility criteria

Inclusion Criteria

  • Willing to provide written informed consent
  • Biopsy proven systemic AL amyloidosis -
  • Age ≥ 18 years
  • Ability to speak and read English
  • Have not started treatment for Al Amyloidosis or who have started treatment for Al Amyloidosis within one month of enrollment

Exclusion Criteria

  • Has initiated AL treatment before 1 month of enrollment including any of the following medications
    • Oral melphalan
    • Bortezomib
    • Thalidomide/lenalidomide
    • Stem cell transplant
      • Having these treatments in the past for another condition (e.g. lymphoma, multiple myeloma) and subsequently diagnosed with systemic AL amyloidosis but is within a month or sooner of starting chemotherapy treatment for AL, are potentially eligible)

Participating Mayo Clinic locations

Study statuses change often. Please contact us for help.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Angela Dispenzieri, M.D.

Open for enrollment

Contact information:

Colleen Irlbeck




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