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Quality of Life of Children With Sickle Cell Disease Who Are Getting Chronic Transfusions With a Lifeport

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT00246077
Recruitment Status : Completed
First Posted : October 30, 2005
Last Update Posted : April 11, 2007
Information provided by:
Children's Mercy Hospital Kansas City

Brief Summary:
This study is being done to see what impact having a Lifeport device has on quality of life for children with sickle cell who are getting chronic transfusions, from the child's perspective.

Condition or disease
Anemia, Sickle Cell

Detailed Description:
There is a paucity of research that focuses specifically on quality of life (QoL) among patients with sickle cell. This study aims to explore the QoL of children who are receiving chronic transfusion therapy (CTT) using a Lifeport device, which allows them to undergo erythrocytapheresis, rather than standard transfusion therapy. Erythrocytapheresis is less time consuming and is associated with less iron overload than conventional transfusion therapy; however, little is known about the implications for the child's QoL. This study will explore QoL from the child's perspective.

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Study Type : Observational
Enrollment : 5 participants
Time Perspective: Cross-Sectional
Time Perspective: Retrospective
Official Title: Quality of Life of Children With Sickle Cell Disease Who Are Receiving Chronic Transfusion Therapy With a Lifeport Device
Study Start Date : October 2005
Actual Study Completion Date : December 2005

Information from the National Library of Medicine

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Ages Eligible for Study:   8 Years to 18 Years   (Child, Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No

Inclusion Criteria:

  • Individuals with a diagnosis of sickle cell disease between the ages of 8 & 18 years
  • currently receiving chronic transfusion therapy via a Lifeport device
  • Individuals have been utilizing the Lifeport for at least 6 months and no more than 18 months
  • Individuals have received transfusions previously using conventional transfusion therapy (simple or exchange transfusions)
  • Individuals have permission of parents (when applicable) and assent

Exclusion Criteria:

  • Individuals who, in the opinion of the study staff, would suffer negative consequence, psychosocial trauma, or undue stress as a result of participation

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT00246077

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United States, Missouri
The Children's Mercy Hospital
Kansas City, Missouri, United States, 64108
Sponsors and Collaborators
Children's Mercy Hospital Kansas City
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Study Director: Susan Sarcone, RN Children's Mercy Hospital Kansas City

Layout table for additonal information Identifier: NCT00246077    
Other Study ID Numbers: CMH 05 07-098E
First Posted: October 30, 2005    Key Record Dates
Last Update Posted: April 11, 2007
Last Verified: November 2005
Keywords provided by Children's Mercy Hospital Kansas City:
chronic transfusion therapy
quality of life
Additional relevant MeSH terms:
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Anemia, Sickle Cell
Anemia, Hemolytic, Congenital
Anemia, Hemolytic
Hematologic Diseases
Genetic Diseases, Inborn