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Trial record 4 of 469 for:    Inherited Bleeding Disorder

Quality of Life in Adult Patients With Severe Haemophilia in Turkey (TurkHaemQoL)

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. Identifier: NCT01623960
Recruitment Status : Unknown
Verified June 2012 by M. Cem Ar, Turkish Society of Hematology.
Recruitment status was:  Not yet recruiting
First Posted : June 20, 2012
Last Update Posted : June 20, 2012
Information provided by (Responsible Party):
M. Cem Ar, Turkish Society of Hematology

Brief 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.

Condition or disease

Detailed 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).

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Study Type : Observational
Estimated Enrollment : 500 participants
Observational Model: Cohort
Time Perspective: Cross-Sectional
Official Title: A Nationwide Multicenter Study on the Quality of Life in Adult Patients With Severe Haemophilia in Turkey
Study Start Date : October 2012
Estimated Primary Completion Date : October 2013
Estimated Study Completion Date : February 2014

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Information from the National Library of Medicine

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   Male
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Adult male patient with severe haemophilia followed at 10 different haemophilia centers in Turkey

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%

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 identifier (NCT number): NCT01623960

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Contact: M.Cem Ar, MD, PhD +905326818890

Sponsors and Collaborators
Turkish Society of Hematology

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Responsible Party: M. Cem Ar, Member, Subcommittee of Haemophilia, Turkish Society of Haematology, Turkish Society of Hematology Identifier: NCT01623960     History of Changes
Other Study ID Numbers: THD-HAEM-QoL
First Posted: June 20, 2012    Key Record Dates
Last Update Posted: June 20, 2012
Last Verified: June 2012
Keywords provided by M. Cem Ar, Turkish Society of Hematology:
severe haemophilia
quality of life
Additional relevant MeSH terms:
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Hemophilia A
Blood Coagulation Disorders, Inherited
Blood Coagulation Disorders
Hematologic Diseases
Coagulation Protein Disorders
Hemorrhagic Disorders
Genetic Diseases, Inborn