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Implications for Quality of Life and Quality of Care in Patients With Hereditary Haemochromatosis

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.
ClinicalTrials.gov Identifier: NCT01991925
Recruitment Status : Unknown
Verified November 2013 by Annick Vanclooster, Universitaire Ziekenhuizen Leuven.
Recruitment status was:  Not yet recruiting
First Posted : November 25, 2013
Last Update Posted : November 25, 2013
Sponsor:
Information provided by (Responsible Party):

Study Description
Brief Summary:
Patients with hereditary haemochromatosis will be interviewed/questioned about their Quality of life and the delivered quality of care in the hospital.

Condition or disease Intervention/treatment
Hereditary Haemochromatosis Other: Interviews, questionaires, RAND-modified delphi method round

Study Design

Study Type : Observational
Estimated Enrollment : 130 participants
Time Perspective: Prospective
Official Title: Implications for Quality of Life and Quality of Care in Patients With Hereditary Haemochromatosis
Study Start Date : January 2014
Estimated Primary Completion Date : March 2014

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Hemochromatosis
U.S. FDA Resources

Groups and Cohorts

Group/Cohort Intervention/treatment
quality of life, quality of care Other: Interviews, questionaires, RAND-modified delphi method round
phase 1: RAND-modified delphi method round with experts in hereditary haemochromatosis phase 2: patient interviews, questionaires and focusgroup interviews


Outcome Measures

Primary Outcome Measures :
  1. evaluation of quality of life [ Time Frame: after 3 months of treatment ]

Eligibility Criteria

Information from the National Library of Medicine

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Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Phase 1: RAND-modified Delphi Method: experts in the field of hereditary haemochromatosis Phase 2: Patients with hereditary haemochromatosis
Criteria

Inclusion Criteria:

  • phase 1: experts in the field of haemochromatosis (hepatologists, hematologists, endocrinologists, general practitioner, nurses, ...)
  • phase 2: patients with hereditary haemochromatosis, treatment with phlebotomy since 3 months, Dutch/English speaking

Exclusion Criteria:

  • patients with secundary iron overload
  • phlebotomy treatment less than 3 months
  • language: no Dutch or English
Contacts and Locations

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 ClinicalTrials.gov identifier (NCT number): NCT01991925


Contacts
Contact: Annick Vanclooster, Nurse 0032-16-348472 annick.vanclooster@uzleuven.be

Locations
Belgium
UZ Leuven Not yet recruiting
Leuven, Vlaams-brabant, Belgium, 3000
Contact: Annick Vanclooster, Nurse    0032-16-348472    annick.vanclooster@uzleuven.be   
Sponsors and Collaborators
Universitaire Ziekenhuizen Leuven
More Information

Responsible Party: Annick Vanclooster, Nurse, Universitaire Ziekenhuizen Leuven
ClinicalTrials.gov Identifier: NCT01991925     History of Changes
Other Study ID Numbers: UZL-INT-01
First Posted: November 25, 2013    Key Record Dates
Last Update Posted: November 25, 2013
Last Verified: November 2013

Additional relevant MeSH terms:
Hemochromatosis
Metal Metabolism, Inborn Errors
Metabolism, Inborn Errors
Genetic Diseases, Inborn
Iron Overload
Iron Metabolism Disorders
Metabolic Diseases