Registration projects in health and health care
The SCNIR was established in 1994 to monitor the clinical course, treatment, and disease oucomes in patients with severe chronic neutropenia. Particpation in the registry benefits the patients, their families and the physicians who treat them by providing the most up to date information on the natural history of severe chronic neutropenia and its treatment options.
The interRAI Mental Health (MH) Assessment System is a comprehensive standardized instrument for evaluating the needs, strengths and preferences of adults with mental illness in in-patient psychiatric settings. This instrument allows for assessment of key domains of function, mental and physical health, social support and service use; with particular items identifying those who could benefit from further evaluation of specific problems to help prevent risk of further decline and improve functioning. The interRAI MH replaced the RAI-MH Version 2.0 as the international standard for inpatient...
. A database was set up in Belgium to collect clinical and laboratory data including parental phenotype, diagnostic technique (neonatal screening or not), major clinical events (episodes of dactylitis, acute chest syndrome, severe anemia, infection, etc), number and duration of required hospitalizations, and treatment used.
To learn about characteristics of this population
To create the connection between practionners
(general, emergency and specialist practionners)