The Swedish ALS/MND Registry

The Swedish ALS/MND Registry was created in 2015 as part of a sub-division of the Neuro-registry already existing in Sweden.

The registry is national, and all ALS teams in Sweden can apply to use it.

All ALS/MND patients in Sweden can be registerted in the Registry, and today we estimate that around 85% of all Swedish ALS/MND patients are registered in the Registry.

The Registry was created to:

  • Make ALS care equivalent, evaluable and of high quality
  • Create a national consensus on investigation and handling of ALS data and patients
  • Ensure that ALS treatment guidelines are followed nationally
  • Enable as many ALS/MND patients as possible to have access to drug studies/clinical trials
  • Increase the collaboration between all Swedish neurological clinics and build up a structure for investigation and management of patients with ALS/MND
  • Participate in future national and international research projects both pre-clinically and clinically
  • Create a data-base for epidemiological studies at national level

It is an opt-out registry, meaning as a patient you can decide to get in or out of registry at all times.

FAQ

I am an ALS/MND patient but I am not in the registry - how can I be registered?

Ask your neurologist or nurse at your neurology clinic to register you during your next appointment.

What happens when I am registered?

Your doctor or nurse will confirm that you have received information about the registry and agree to be part of it. Then, he/she will document in your medical journal that you are part of the registry.

What is registered in the registry?

We register basic data (only registered once) and then every 3 months more data is registered. Perfect for your health practionner to enter the data as you have you regular follow-up with them!

The basic data is composed of: date and region on your first symptom onset, date of ALS/MND doagnosis, date of the first visit to a neuologist/specialist and registration of your symptoms.

The minimum data set to enter every 3 months is composed of information on motor dysfunction and progression pattern, bulbar dysfunction symptoms, BMI, information on anxiety and depression, on cognitive decline and emotional incontinence, quality of life, hypoventilation symptoms, pain and medication.

What is the Patient’s own Registration (PER)?

The Patient’s own registration (PER in Swedish) allows the patient to directly enter data and information into the registry. In case of speech difficulties, it also allows patients to answer questions without time pressure, as this can be done from home.

Data entered by a patient is then imported into the registry and then validated by a nurse of a doctor.

As a patient using PER, you also receive a reminder 2 weeks before your visit with your nurse/neurologist so you have enough time to complete online questionnaires before your next appointment.

What information can be entered through the PER?

7 measures are captured through the PER : Hospital Anxiety and Depression Scale, medication use, information on motor/bulbar dysfunction and progression pattern, pain rating, quality of life, self-evaluation of swallowing difficulties, BMI.

This is almost exactly what needs to be collected in the minimum data set, recorded every 3 months!

How can the registry support your healthcare team?

By being registered in the registry, it helps your clinic team monitoring your disease progression.

It also provides a fair value and a trend value for each patient that comes with preliminary outcomes.

Having access to all this information at the same place, summarized under one full picture, can support your clinic team in their decision making process for your care.

Contact

Eva-Carin Jacobsson

Affiliated to teaching/tutoring