Privacy Policy

This Privacy Policy applies to information collected on the Neurological Clinical Research Institute (NCRI) of Massachusetts General Hospital Clinical Research Platform (Platform), as well as to all our services platforms, including the ALS Focus platform, and other services and websites, except where otherwise noted by a separate unique privacy policy.

The NCRI is committed to protecting the privacy and security of the users of the Platform.

This Privacy Policy outlines what information we collect, how it is used, and what your choices are. By using the Platform, you agree to the acceptance of this Website Privacy Policy. Please read the following carefully before using the site.

Information We Collect

The types of information we collect:

  • IP address and browser user agent string are collected when you visit the Platform. An IP address is a number automatically assigned to your computer whenever you access the Internet. IP addresses allow computers and servers to recognize and communicate with one another. We collect IP address information so that we can properly manage our system and gather information about how our site is being used. This includes the pages visitors are viewing. Your IP address may be associated with records containing personal information.

When you create your account:

  • We collect personal information that includes information that is unique to an individual, such as first name, last name, email address, phone number and organization.
  • If you submit any personal information relating to other people to the NCRI, you represent that you have the authority to do so and permit us to use the information in accordance with this privacy policy. By submitting personal information, you grant the NCRI the right to transmit, monitor, retrieve, store and use your information in connection with the operation of the website.

How We Use This Information

The NCRI uses the information you provide to register and manage your online account, to fulfill online requests and respond to customer service inquiries, or in other ways as allowed by law.

We may use your information:

  • To allow you to conduct regular clinical research tasks utilizing the Platform
  • To respond to your questions and requests
  • To communicate changes to our privacy policy or terms of use

Access to Your Information

Only those who need the provided information to perform a specific task have access to your information. These are authorized members of the NCRI team.

The NCRI keeps personal information on file, but does not share, sell, license or transmit this information to third parties or external vendors unless required to do so by legal, judicial or governmental proceedings.

Data Security

The NCRI makes every reasonable effort to ensure that your personal information remains as secure as possible. Accordingly, we prevent unauthorized access using a secure firewall and the use of security technologies to protect the integrity and privacy of any personal information you provide.

As an additional security measure, your personal information is encrypted during transmission by Secure Socket Layer 128-bit encryption software. (Encryption is a common method used to transmit sensitive data across the Internet. Encryption temporarily makes the text unreadable during the time it is being transmitted over the Internet.) This is an industry standard.

Although we endeavor to protect your personal information, the NCRI cannot warrant the security of any information you transmit to us through online applications, and you do so at your own risk. Depending on the nature of the inquiry, your communication could be discarded or archived. If you wish, you can contact us instead by telephone at the number provided throughout our site.

Online Forms

Forms provided on the Platform may include registration request. The information required to complete the transaction is noted on the form. Although we provide robust security measures to protect the transmission of information, the NCRI is not responsible if unauthorized parties gain access to the confidential information shared in the online forms.

Email Information

We use your email addresses for the confirmation, verification, and notification purposes. Please note that email is considered an unencrypted (and, therefore, unsecure) form of communication, and it can be accessed and viewed by others without your knowledge and permission. For that reason, to protect your privacy, please do not use email to communicate information that you consider confidential.


Cookies are small computer files that a website can transfer to your computer.

Type of cookies we use:

  • Session cookies are temporary cookies and expire once you close your browser (or once your session ends)

In particular:

  • Cookies used for the sole purpose of carrying out the transmission of a communication
  • Cookies that are strictly necessary in order to browse the website and use its features
  • User input cookies, for the duration of a session
  • Authentication cookies, for the duration of a session

We collect information about the activity of individual Platform users.

Links to External Websites

This Privacy Policy applies to information collected on the Platform, as well as to all our services platforms, and other services and websites, except where otherwise noted by a separate unique privacy policy.

In order to provide the Platform users with other helpful information, the Platform may provide links to other websites. The NCRI provides no authority over external organizations' websites and this policy does not apply to external sites that are provided as links. We encourage you to read the Privacy Policies on any external websites before providing them with any personal information.

Changes to This Policy

The NCRI has the right to change or update this Website Privacy Policy from time to time without notice, so please review it periodically to keep informed of any changes. If you have questions about this privacy policy or concerns about how we collect, use or protect your personal information, please contact us at