Validation of the Sickle Cell Disease Pain Burden Interview

The purpose of this study is to validate a brief survey tool, the SCD Pain Burden Interview (SCPBI), which can be used in the clinical and/or research settings to assess the impact of pain on children with sickle cell disease.

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Key information

Conditions

Sickle Cell Disease Anemia Anemia, Hemolytic Anemia, Hemolytic, Congenital Anemia, Sickle Cell Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemoglobinopathies Neurologic Manifestations Pain Pathological Conditions, Signs and Symptoms Signs and Symptoms

Age range

7 year–21 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Connecticut Children's Medical Center

Hartford, Connecticut, 06106, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Documented sickle cell disease
7 years old or greater
Primary caregiver present at the first visit for children < 18 years of age

Exclusion criteria

Primary language spoken other than English
Patient is in acute pain episode at time of initial visit

Treatment and study plan

Primary outcomes

Correlation with validated measures of pain interference, function, quality of life, and mood.

Time frame: Quarterly

Sponsors and collaborators

Lead sponsor

Connecticut Children's Medical Center

Other

Registry information

Important dates

Study start: 2008
Primary completion: 2012
Study completion: 2012
First posted: Dec 8, 2008
Registry last updated: Jul 30, 2013

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed