NfL as a criterion in care

NfL as a criterion in care

APST would like to develop the biomarker neurofilament light chain (NfL) as a criterion for the urgency of care for people with ALS. The NfL value in the blood is – in addition to the ALS symptoms – a marker of the ALS progression rate. A high serum NfL level is often associated with a higher rate of progression of ALS symptoms.

The consideration of a higher NfL value is intended to support the medical urgency of care and the initiation of early treatment.

This will make it possible to provide assistance that is geared towards the individual progression of the disease. The inclusion of the biomarker NfL in the assessment of ALS progression and the decision-making process for the provision of assistive devices is new and is part of a research program being carried out by APST in collaboration with the ALS outpatient clinic at Charité and other specialist ALS centers.

Further information

Why do we need a criterion for the urgency of care?

One of the main problems in the care of people with ALS, particularly with regard to the provision of assistive devices, is the high latency of care (the delay between the identification of a need for an assistive device and the provision of the device). In the current care processes, especially in the approval processes at the health insurance companies, no distinction is made between rapid and slow disease progression. As a result, the provision of assistive devices is often delayed too much for people with a high degree of ALS progression. Against this background, it is being investigated whether the NfL value should be taken into account as a criterion for the urgency of care and thus support the timely initiation of care.

What is the biomarker NfL?

NfL is a nerve cell-specific protein that is released into the blood when the nerve cell is damaged. NfL is currently being investigated as a prognosis and progression marker for ALS in the “NfL in ALS” study in Germany. It is assumed that there is a correlation between the NfL concentration in the blood and the prognosis of ALS progression.

How can I participate in NfL testing as an urgency criterion for care?

Research into NfL as a criterion for care is currently being carried out at the Charité ALS Center. In the future, the inclusion of further specialized ALS centers is planned. Participation in this project is possible if the following requirements are met: 1) Participation in the scientific study “NfL in ALS” 2) Consent to the APST register study and 3) Consent to the use of data from the APST platform

How can the scientific data be used for healthcare?

At the Charité ALS Study Center, the serum concentration of NfL is used as an additional decision criterion for the urgency of care and is scientifically evaluated. Generally speaking, high NfL values indicate a greater urgency for treatment. The established decision criteria for initiating care (with aids and remedies, respiratory aids and nutritional therapy) remain unchanged.

In addition to the clinical examination findings, the ALS Functional Rating Scale (ALS-FRS), the change in ALS-FRS values per month (ALS progression rate), the respiratory and weight parameters as well as various socio-medical criteria and the previous most important decision criteria. With your consent to the APST register study and registration with the APST care portal, you can view the progression of your NfL values in your APST user account.

Management of the program

Do you have questions about NfL in ALS care? I will be happy to help you!

Peggy Schumann

Medical research

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