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

Status

Withdrawn

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01991925

Enrollment

Registered

2013-11-25

Start date

2016-04-30

Completion date

2017-03-31

Last updated

2023-03-31

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Hereditary Haemochromatosis

Brief summary

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

Detailed 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

Interventions

OTHERInterviews, 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

Study design

Observational model

OTHER

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame	Description
evaluation of quality of life	after 3 months of treatment	quality of life

Countries

Belgium

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026