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

Hereditary Haemochromatosis Clinical Trial

Official title:

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

Clinical Trial Details — Status: Withdrawn

Administrative data

• NCT number: NCT01991925
• Other study ID #: UZL-INT-01
• Status: Withdrawn
• Start date: April 2016
• Est. completion date: March 2017

Study information

• Verified date: March 2023
• Source: Universitaire Ziekenhuizen KU Leuven
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial Summary

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

Description:

Patients with hereditary haemochromatosis will be interviewed/questioned about their Quality of life and the delivered quality of care in the hospital during follow-up

Recruitment information / eligibility

• Status: Withdrawn
• Enrollment: 0
• Est. completion date: March 2017
• Est. primary completion date: March 2017
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years and older

Eligibility

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 secondary iron overload

• phlebotomy treatment less than 3 months

• language: no Dutch or English

Related Conditions & MeSH terms

• Hemochromatosis
• Hemosiderosis
• Hereditary Haemochromatosis

Intervention

Other:
• Interviews, questionaires, RAND-modified delphi method round
phase 1: RAND-modified delphi method round with experts in hereditary haemochromatosis phase 2: patient interviews, questionnaires and focus group interviews

Locations

Country	Name	City	State
Belgium	UZ Leuven	Leuven	Vlaams-brabant

Sponsors (1)

Lead Sponsor	Collaborator
Universitaire Ziekenhuizen KU Leuven

Country where clinical trial is conducted

Belgium, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	evaluation of quality of life	quality of life	after 3 months of treatment