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Construction of a Health-related Quality of Life (HR-QOL) Questionnaire for Patients With Primary Antibody Deficiency Disease

NCT02542228 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 76

Last updated 2017-01-13

No results posted yet for this study

Summary

This research is being done to construct a survey questionnaire, a quality of life tool, to determine the health, well-being, ability to perform daily activities, and physical, social and emotional functioning in participants with primary immunodeficiency disorders (PIDD). This quality of life (QOL) tool will help physicians understand the effects of PIDD on a person's health. These quality of life surveys are important tools for physicians to measure outcomes for satisfaction and effects of treatment.

Conditions

  • Immune Deficiency, Antibody

Interventions

OTHER

questionnaire survey

The HR-QOL PIDD survey will be administered to the patient by the site PI or the study coordinator. A second survey will be handed to the patient to take home with them and completed at 48-120 hrs. after the clinic visit. The study coordinator will contact the patient during this period to ensure that the patient completes this second survey and returns it to the local study site. A case report form (CRF) of their clinical condition and demographics will be collected at the time of informed consent.

Sponsors & Collaborators

  • University of Virginia

    collaborator OTHER

  • Boston Children's Hospital

    collaborator OTHER

  • Baylor College of Medicine

    collaborator OTHER

  • Johns Hopkins University

    collaborator OTHER

  • Midwest Immunology Clinic

    collaborator UNKNOWN

  • CSL Behring

    collaborator INDUSTRY

  • University of South Florida

    lead OTHER

Eligibility

Min Age
18 Years
Max Age
65 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2014-03-31
Primary Completion
2016-01-31
Completion
2016-09-30

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02542228 on ClinicalTrials.gov