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

The recruitment status of this study is unknown. The completion date has passed and the status has not been verified in more than two years.
Verified November 2013 by Universitaire Ziekenhuizen Leuven.
Recruitment status was:  Not yet recruiting
Information provided by (Responsible Party):
Annick Vanclooster, Universitaire Ziekenhuizen Leuven Identifier:
First received: November 18, 2013
Last updated: NA
Last verified: November 2013
History: No changes posted
Patients with hereditary haemochromatosis will be interviewed/questioned about their Quality of life and the delivered quality of care in the hospital.

Condition Intervention
Hereditary Haemochromatosis
Other: Interviews, questionaires, RAND-modified delphi method round

Study Type: Observational
Study Design: Time Perspective: Prospective
Official Title: Implications for Quality of Life and Quality of Care in Patients With Hereditary Haemochromatosis

Resource links provided by NLM:

Further study details as provided by Universitaire Ziekenhuizen Leuven:

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

Estimated Enrollment: 130
Study Start Date: January 2014
Estimated Primary Completion Date: March 2014 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
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


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

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
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01991925

UZ Leuven
Leuven, Vlaams-brabant, Belgium, 3000
Sponsors and Collaborators
Universitaire Ziekenhuizen Leuven
  More Information

Responsible Party: Annick Vanclooster, Nurse, Universitaire Ziekenhuizen Leuven Identifier: NCT01991925     History of Changes
Other Study ID Numbers: UZL-INT-01 
Study First Received: November 18, 2013
Last Updated: November 18, 2013

Additional relevant MeSH terms:
Metal Metabolism, Inborn Errors
Metabolism, Inborn Errors
Genetic Diseases, Inborn
Iron Overload
Iron Metabolism Disorders
Metabolic Diseases processed this record on February 20, 2017