Brief Title
Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.
Official Title
Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.
Brief Summary
This study aims to make an inventory of the condition and care of patients with haemophilia and carriers for haemophilia in Ivory Coast and to promote the use non substitutive strategies that are not costly and available in Ivory Coast, to improve the management of haemophilia in this country. The purpose of this project is to evaluate the extent to which the active promotion of these various measures will improve the care of patients with haemophilia and carriers in Ivory Coast.
Detailed Description
1. Establish a baseline of the condition of haemophilia in Ivory Coast (number of patients, demographics, reassessment of diagnosis, joint status...).(year 1) 2. Develop tools to assess the intervention (eg transcultural validation of QoL questionnaires, develop booklets to record bleedings...). (year 1) 3. Intervention phase that will focus on education of patients and their family, education of caregivers, training of the laboratory to the diagnosis of haemophilia and promotion of non substitutive strategies to improve haemophilia care in Ivory Coast (DDAVP, antifibrinolytics, physiotherapy, dental care,...). 4. Follow-up phase during 2 years. 5. Outcome analysis
Study Type
Interventional
Primary Outcome
Improve haemophilia care in Ivory Coast
Condition
Haemophilia
Intervention
Education
Study Arms / Comparison Groups
Patients with Haemophilia
Description: Male patients with severe and moderate haemophilia A and B in Ivory Coast
Publications
* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.
Recruitment Information
Recruitment Status
Other
Estimated Enrollment
142
Start Date
January 16, 2017
Completion Date
September 17, 2019
Primary Completion Date
December 31, 2018
Eligibility Criteria
Inclusion Criteria: - Males with severe and moderate haemophilia A and B in Ivory Coast (any age). - Females over 12 years who are carriers for severe and moderate haemophilia A and B in Ivory Coast. - Exclusion Criteria: subjects not willing to participate.
Gender
All
Ages
12 Years - N/A
Accepts Healthy Volunteers
No
Contacts
Catherine M Lambert, MD, ,
Location Countries
Côte D'Ivoire
Location Countries
Côte D'Ivoire
Administrative Informations
NCT ID
NCT03054662
Organization ID
002/MSHP/CNER-kp
Responsible Party
Sponsor
Study Sponsor
Cliniques universitaires Saint-Luc- Université Catholique de Louvain
Collaborators
World Federation of Hemophilia
Study Sponsor
Catherine M Lambert, MD, Study Director, Cliniques universitaires Saint-Luc
Verification Date
September 2019