Background

Abstract 2020: registry of Multiple Sclerosis in the Netherlands.

Background:

Due to the complexity of Multiple Sclerosis (MS) there is no standard treatment available.

The Dutch registry of MS is a registration of data on the Dutch population of people with Multiple Sclerosis, which has been set up to measure, improve and justify the quality of care.

This registry records the characteristics of the patient and the care provided in terms of actions on the one hand and results on the other. It also contains data reported by patients. By recording the care itself and the most important results in comparable situations (based on previously agreed variables), meaningful connections and comparisons can be made, making it possible to improve care.

Neurologists, MS nurses and other care providers involved in the care of MS patients participate in this registry.

Objectives

Mapping, monitoring and improve the continuing care of patients with multiple sclerosis.

Gain insight into the effects, side effects and reasons for switching of existing treatments.

Methods

The registry includes patients diagnosed with MS in the Netherlands from January 1, 2016.

Various medications and their effects are recorded in this registry.

Data is collected on the course of treatment, additional research that has been carried out to make the diagnosis, treatment by MS nurses, the use of medication, follow-up of medication, side effects, reasons for switching and the use of rehabilitation.

These treatment data can be compared at local level. Each center can compare their data with the national benchmark.

Patients complete questionnaires (EQ5-D, supplemented with social status and work and income). This results in Patient Reported Outcome Measures and Patient Reported Experience Measures.

Results

2 year data, 54 centers have included 750 patients (data dec.2019), about 50 percent of patients filled out the questionnaires

Conclusions

This allows a better view of the effect on the individual patient, as well as on groups of people with MS. By collecting this information, we gain a better understanding of the quality of care. This registry can therefore contribute to a better treatment for patients with multiple sclerosis.

Background

Abstract 2020: registry of Multiple Sclerosis in the Netherlands.

Background:

Due to the complexity of Multiple Sclerosis (MS) there is no standard treatment available.

The Dutch registry of MS is a registration of data on the Dutch population of people with Multiple Sclerosis, which has been set up to measure, improve and justify the quality of care.

This registry records the characteristics of the patient and the care provided in terms of actions on the one hand and results on the other. It also contains data reported by patients. By recording the care itself and the most important results in comparable situations (based on previously agreed variables), meaningful connections and comparisons can be made, making it possible to improve care.

Neurologists, MS nurses and other care providers involved in the care of MS patients participate in this registry.

Objectives

Mapping, monitoring and improve the continuing care of patients with multiple sclerosis.

Gain insight into the effects, side effects and reasons for switching of existing treatments.

Methods

The registry includes patients diagnosed with MS in the Netherlands from January 1, 2016.

Various medications and their effects are recorded in this registry.

Data is collected on the course of treatment, additional research that has been carried out to make the diagnosis, treatment by MS nurses, the use of medication, follow-up of medication, side effects, reasons for switching and the use of rehabilitation.

These treatment data can be compared at local level. Each center can compare their data with the national benchmark.

Patients complete questionnaires (EQ5-D, supplemented with social status and work and income). This results in Patient Reported Outcome Measures and Patient Reported Experience Measures.

Results

2 year data, 54 centers have included 750 patients (data dec.2019), about 50 percent of patients filled out the questionnaires

Conclusions

This allows a better view of the effect on the individual patient, as well as on groups of people with MS. By collecting this information, we gain a better understanding of the quality of care. This registry can therefore contribute to a better treatment for patients with multiple sclerosis.