Patterns of Hemophilia Care in Assiut Children Patients

NCT05980377 | Unknown

• 1 other identifier: Pattern of Hemophilia care
• Study Type: observational
• Target: 60
• Locations: 0 countries
• Sites: N/A

Brief Summary

Hemophilia A and B are congenital, recessive X-linked disorders caused by lack or deficiency of clotting factor VIII (FVIII) or IX (FIX), respectively. The severity of the disease depends on the reduction of levels of FVIII or FIX, which are determined by the type of the causative mutation in the genes encoding the factors (F8 and F9, respectively). The hallmark clinical characteristic, especially in untreated severe forms, is bleeding (spontaneous or after trauma) into major joints such as ankles, knees and elbows, which can result in the development of arthropathy. Intracranial bleeds and bleeds into internal organs may be life-threatening. The median life expectancy was \~30 years until the 1960s, but improved understanding of the disorder and development of efficacious therapy based on prophylactic replacement of the missing factor has caused a paradigm shift, and today individuals with hemophilia can look forward to a virtually normal life expectancy and quality of life.

Conditions

Hemophilia A; Hemophilia B

Outcome Measures

Primary Outcomes (2)

• care in hemophilia patients

  Describe different aspects of care in hemophilia patients in Assiut children university hospital

  Baseline

• Describe complications in availability of factors

  describe different aspects of complications and challenges in availability of factors ,bypassing agents which are used to manage hemophilia patients with inhibitors in Assiut children university hospital

  Baseline

Eligibility Criteria

• Age: Up to 18 Years
• Sex: all
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

All patients diagnosed with hemophilia attending Assiut university hospital of children in 2 years duration

You may qualify if:

• All patients diagnosed with hemophilia attending Assiut university hospital of children

You may not qualify if:

• Any patient with other bleeding disorder

Sponsors & Collaborators

• Assiut University: lead

MeSH Terms

Conditions

Hemophilia A; Hemophilia B

Condition Hierarchy (Ancestors)

Blood Coagulation Disorders, Inherited; Blood Coagulation Disorders; Hematologic Diseases; Hemic and Lymphatic Diseases; Coagulation Protein Disorders; Hemorrhagic Disorders; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Genetic Diseases, X-Linked

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: OTHER
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: July 29, 2023
• First Posted: August 8, 2023
• Study Start: September 1, 2023
• Primary Completion: June 1, 2024
• Study Completion: August 1, 2024
• Last Updated: August 8, 2023

Record last verified: 2023-07