Information for patients

FAQs

What data is being collected in the Registry

We collect socio-demographic data and data on your diagnosis
Socio-demographic data:

  • You are given a BNMDR identification number that will be kept throughout the study
  • Date of birth
  • Gender
  • Postal code
  • Signed a convention with the NIHDI

Diagnosis data:

  • Age at first symptoms
  • Age at diagnosis
  • Diagnosis
  • Stage of disease

Who is collecting the data

The data is collected by your neurologist in your NMRC during your annual visit. He will be asking you questions to enter in the Registry.

Who has access to this data

Your neurologist entering your data is the first person to have access to your data. Then the data is sent to the scientists at the WIV-ISP. They cannot see your name as your name is never saved in the Registry. This person analyses the data in a congregated manner, meaning that you will never be singled out and no one will be able to identify you.

Where is the data going once it has been collected

The data is stored on a secured server at the WIV-ISP.

How long will my data be saved

The data is saved indefinitely on the server.

Can I opt out of the Registry after I have signed up

Yes, at any moment you can ask your neurologist to cancel your subscription. There is a yearly renewal so you will be asked if you still want to participate.

Is there a cost for joining the Registry

No, the Registry is collected from willing patients. It will not cost you anything and you will not receive any compensation from taking part in the Registry.

How can I be included in a clinical trial or study

Firms contact the Registry. The Registry worker identifies patients eligible for the study with the BNMDR identity number. They then contact the NMRCs. The neurologist within your NMRC is the only person that can contact you to ask you if you would like to take part in the clinical trial.

If I do not want to participate to clinical trials, should I still register in BNMDR

Yes. The Registry has different purposes and if you do not wish to be contacted, let your neurologist know and they will avoid bothering you to buy fifa coins.