Name Steward Organization Suggested Domain Suggested Domain Description Cde Group Classification
In the past 30 days, how often did your family feel like you were a burden? NHLBI Health outcomes
Patient and caregiver health outcomes
 NIH CDEs
  • ▼ NHLBI
    • ▼ Sickle Cell Disease
      • ▼ Domain
        • ▼ Outcomes and End Points
          • Quality of Life/Patient Reported Outcomes
          • Social Role Participation and Social Competence
      • ▼ Classification
        • Proposed

# Datatype

UUID: d3d6febe-9530-5bd2-b5c3-b3f27fcb2394

Value List

# Permissible value Value meaning name

UUID: 991b3763-6312-5a65-82e0-fcfecfb80b94

Always Always

UUID: 59fee3f0-0bab-532d-ba05-9c316c805cc5

Never Never

UUID: a05b6005-2e9e-5bcb-b106-a95b968991dd

Often Often

UUID: 9e77834e-e872-5576-8ed8-d84cd3a0b3dd

Rarely Rarely

UUID: 014f7a63-656c-57c1-994d-b625b7508542

Sometimes Sometimes

# Definition Tags

UUID: fba40c97-27f5-55c2-9b20-a4455b767b11

Scale for the frequency in the past 30 days that the subject/participant's family considered him or her to be a burden, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). Short Description Description

# Designation Tags

UUID: 2ce998de-3023-5872-b1fa-05a811721e78

In the past 30 days, how often did your family feel like you were a burden?

UUID: 1ca7037c-daed-51b2-837e-218275b53a7e

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Family consider subject burden past 30 day frequency scale Preferred Question Text

# Identifier Origin Version

UUID: 35b1318f-7b9b-55e0-aef4-bf53f36f41e4

AyBgbNYF3u NLM CDEs 12-02-2025-download

UUID: cd18bd91-6d67-5d92-94f8-59df9089a27e

ASCQMeFmCsdrSjBdnPs30DyFrqScl BRICS Variable Name N/A

UUID: 8abb8e7a-5570-5a07-b8ba-b7d7ab4e1b0e

C58616 NHLBI ID N/A