01/04

Purpose of the TRICALS registry

The purpose of the TRICALS registry is to connect people with Motor Neuron Disease (MND), or Amyotrophic Lateral sclerosis (ALS) interested in clinical trials with MND centres performing them.

What information is collected?

If you decide to register, you will be asked for information about yourself and where you live. Providing this information is voluntary. We will need it to include your details on our TRICALS Registry. To make sure our information is accurate, we will ask you some questions about your condition. We will also ask you to complete a short questionnaire (this takes around 10 minutes) every 3 months to keep us informed about your condition.

Risks

By taking part in the TRICALS registry you are giving us information about yourself that could theoretically be obtained by a third party. To keep this from happening, we will limit who can see your information. We will also have security measures in place that keeps your information safe, including using secure protocols for transmission of data electronically.

Benefits

The purpose of TRICALS is to match those with MND with potential new treatments. Your participation will allow us to design and perform better trials. If your form of MND is suitable for inclusion in a clinical trial , we will send you an invitation for a screening visit to an MND centre as close to your home as possible.

Confidentially

Your information will be kept private to the extent allowed by law. Only authorized individuals will have access to your information. Your information will be stored in a secure location with limited access.

Consent

On the following page, you will be asked to provide your personal and medical information. Your decision to provide the requested information requires your explicit consent. TRICALS may share this information with appropriate TRICALS staff, including administrative and medical staff, and researchers. If you consent, you will help to create the TRICALS Registry and in doing so you will contribute to important research on MND.

02/04

Personal information

Please provide the personal and basic medical information for the person diagnosed with MND.

No one will access your personal information except those persons authorized by TRICALS to do so. Your personal information will not be used for commercial purposes or otherwise passed on to a third party.

Gender*
Country of residence*
03/04

Medical information

Diagnosis*
Have you been seen by a Neurologist?*
Site of first symptom onset*
04/04

Contact preferences

Please let us know for what purposes TRICALS may contact you.

TRICALS would like to contact you about (future) clinical trials and additional information*
TRICALS would like to sent you every three months an 10-minute online questionnaire about daily functioning and clinical care*
Would you like to receive the TRICALS newsletter?*