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Completed

NCT Number: NCT03054662

Non Substitutive Strategies to Improve Haemophilia Care in Developing Countries. Experience in Ivory Coast.

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.

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Key information

Conditions

Haemophilia Blood Coagulation Disorders Blood Coagulation Disorders, Inherited Coagulation Protein Disorders Congenital, Hereditary, and Neonatal Diseases and Abnormalities Developing Countries Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemophilia A Hemorrhagic Disorders

Age range

12 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

CHU de Yopougon

Abidjan, Côte d’Ivoire

About this study

  • Establish a baseline of the condition of haemophilia in Ivory Coast (number of patients, demographics, reassessment of diagnosis, joint status...).(year 1)
  • Develop tools to assess the intervention (eg transcultural validation of QoL questionnaires, develop booklets to record bleedings...). (year 1)
  • 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,...).
  • Follow-up phase during 2 years.
  • Outcome analysis

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Education

Other

Education of patients and caregivers about haemophilia and carriers of haemophilia.

Improve biological diagnosis and follow-up of haemophilia

Diagnostic Test

train the laboratory to the diagnosis ans follow-up un haemophilia

Implement haemostatic non substitutive care of haemophilia

Drug

Implement the use of DDAVP and antifibrinolytics in patients with haemophilia and symptomatic carriers

Implement non haemostatic care of haemophilia

Other

Implement regular physiotherapy, develop dental care, promote the regular use of pain killers

Other names: Physiotherapy, dental care, pain killers

Primary outcomes

  1. Improve haemophilia care in Ivory Coast

    Time frame: 2 years after intervention

    Compare QoL questionnaires before and after the intervention phase

  2. Improve haemophilia diagnosis of haemophilia in Ivory Coast

    Time frame: 3 years

    Compare the number of patients with haemophilia between the beginning and the end of the study

  3. Improve haemophilia care in Ivory Coast

    Time frame: 2 years after intervention

    Compare the pain assessment before and after the intervention phase

  4. Improve knowledge about haemophilia in Ivory Coast

    Time frame: 2 years after intervention

    Compare the knowledge queestionnaires about haemophilia before and after the intervention phase

Sponsors and collaborators

Lead sponsor

Cliniques universitaires Saint-Luc- Université Catholique de Louvain

Other

Collaborators

  • World Federation of Hemophilia

Registry information

Important dates

Study start
2017
Primary completion
2018
Study completion
2019
First posted
Feb 15, 2017
Registry last updated
Sep 27, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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