Name Steward Organization Suggested Domain Suggested Domain Description Cde Group Classification
In the past 7 days, how often did you have very severe pain? NHLBI Health outcomes
Patient and caregiver health outcomes
 NIH CDEs
  • ▼ NHLBI
    • ▼ Sickle Cell Disease
      • ▼ Domain
        • ▼ Outcomes and End Points
          • Pain
          • Patient Reported Outcomes
          • Quality of Life/Patient Reported Outcomes
      • ▼ 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: 6b731838-ebd8-58e5-8756-87083fa7826b

Scale for the frequency over the past 7 days that the subject/participant had severe pain, as part of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). Short Description Description

# Designation Tags

UUID: 43a8fa88-fd28-5681-a815-7933a9d66f38

Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) - Pain severe past 7 day frequency scale Preferred Question Text

UUID: 63c8ca34-d99e-5eb2-90ca-0d513d90b45b

In the past 7 days, how often did you have very severe pain?

# Identifier Origin Version

UUID: 2a117391-7d17-5241-a26f-8e998b012d33

C58651 NHLBI ID N/A

UUID: eb635faf-6544-5f04-869e-ee0cd10b10b5

ASCQMePnSeverPs7DyFrqScl BRICS Variable Name N/A

UUID: e31ba634-b1b5-5a87-9efb-629d5b0c1908

U9MWNY0kpe NLM CDEs 12-02-2025-download