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Clinical Trial Details — Status: Not yet recruiting

Administrative data

NCT number NCT01623960
Other study ID # THD-HAEM-QoL
Secondary ID
Status Not yet recruiting
Phase N/A
First received June 17, 2012
Last updated June 17, 2012
Start date October 2012
Est. completion date February 2014

Study information

Verified date June 2012
Source Turkish Society of Hematology
Contact M.Cem Ar, MD, PhD
Phone +905326818890
Email mcemar68@yahoo.com
Is FDA regulated No
Health authority Turkey: Turkish Institute for Drugs and Medical Devices
Study type Observational

Clinical Trial Summary

The primary aim of this study is to evaluate the overall quality of life in adult patients with severe haemophilia (an inherited bleeding disorder affecting mainly men) in Turkey and to assess the impact of certain disease and drug related factors (treatment modality, presence of viral disease, inhibitor, etc.) on the quality of life.


Description:

Haemophilia is an inherited bleeding disorder affecting one in 10000 male births worldwide. People with severe haemophilia usually suffer from recurrent life threatening bleeds (e.g. into the brain, digestive system or abdomen) and/or disabling degenerative disease of weight bearing joints (e.g. knees, elbows and ankles)resulting from haemorrhage into the joints. Daily activities of people with haemophilia has been shown to be dramatically hampered by the resultant joint damage. Evaluation of quality of life issues in people with severe haemophilia would help to create awareness of their problems and limitations. This would also set up the scene for developing policies to improve the treatment options/facilities and social life of the patients. Current study aims to assess the quality of life of adult patients with severe haemophilia in a developing country (Turkey) by using a validated Quality of Life Questionnaire (Turkish version of Haem-A-QoL).


Recruitment information / eligibility

Status Not yet recruiting
Enrollment 500
Est. completion date February 2014
Est. primary completion date October 2013
Accepts healthy volunteers No
Gender Male
Age group 18 Years and older
Eligibility Inclusion Criteria:

- age equal or greater than 18 years

- male gender

- factor VIII or IX level equal or below 1%

- patients that are willing to participate and have given a written consent

Exclusion Criteria:

- age less than 18 years

- females

- factor levels above 1%

Study Design

Observational Model: Cohort, Time Perspective: Cross-Sectional


Related Conditions & MeSH terms


Locations

Country Name City State
n/a

Sponsors (1)

Lead Sponsor Collaborator
Turkish Society of Hematology
See also
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