IMplementation of the HEAD-US as routineoutcome parameter in observational studies

Overall Goal: Optimizing treatment in hemophilia care by systematic evaluation of therapeutic interventions on the basis of valid outcome parameters. To this end we will implement the HEAD US scoring system as routine outcome parameter into standard care of hemophilic children, adolescents and young adults in Germany and secure quality improvement. 

Target Population: Age from 1-25 years of age, with moderate or severe hemophilia A or B treated in Hemophilia Centers in Germany. 

 

Methods: Quality Improvement Study, Development of target intervention via PDSA cycling. Evaluation of success based on the following outcome parameters: (1) Success of implementation measured by number/ percentage of patients with severe to moderate hemophilia investigated by the HEAD US score in participating hemophilia centers. (2) Quality of ultrasound investigation assessed by intercomparison programmes including assessment of reliability.  

 

Assessment: Currently no easily accessible and valid outcome parameters are available to (i) detect early joint damage and (ii) measure potential changes by repeated measurements. It is imperative to establish suitable noninvasive outcome parameters to compare different clinically relevant therapeutic strategies in children.