Privacy Policy

Altarum Institute

This Privacy Policy is designed to inform users of the Altarum Innovations in Newborn Screening Interoperability (INBSI) ( website and services (collectively, the “Service”). This Privacy Policy covers how Altarum treats data that you may share when you use the Service (“Data”). Altarum established this Privacy Policy to let you know the kinds of information we may gather, why we gather your information, what we use your information for, how you can manage your information, and under what circumstances, if any, it is disclosed. By using the Service, you are accepting the practices described in this Privacy Policy.

Changes to this Privacy Policy

Altarum may update this Privacy Policy from time to time by posting a new version online. You should check this page occasionally to review any changes. This helps you always be aware of what information we collect, how we use it and under what circumstances, if any, it is disclosed. Your continued use of the Service and/or continued provision of personal information to us will be subject to the terms of the then-current Privacy Policy.

Types of Information Collected

Altarum may collect Non-Personally Identifiable Information or Personal Data when you register for the Service or when you use the Service. When you sign up for an account, we collect the personal data you submit to us through the registration process. Some of our tools do not retain your personal data, while others store your personal data in accordance with this Policy.  Depending on how you use the Service, we collect different kinds of information about you. This information may include:

Non-Personally Identifiable Information

Non-personally identifiable information includes information that does not personally identify you, but it may be linkable to you.

Personal Data

Among the types of Personal Data that the Service may collect from the you, there are: geographic position, general activity data, movement activity, Cookies, Usage Data, first name, last name, email address and phone number. Some information regarding phone and SMS usage may be obtained from your device in the case that you choose to utilize the Service via a smartphone, tablet or similar electronic device.

Personal Data may be freely provided by the user of the Service, or, in case of Usage Data, collected automatically.

Whenever you visit our website, Altarum receives and records information on our server logs from your browser, including your IP address, Altarum’s cookie information and the pages you request. Any use of Cookies – or of other tracking tools – serves the purpose of providing, customizing or improving the Service.

Collection and Combination of Information from Other Sources

We also may collect information about you that we may receive from other sources or from our offline interactions with you to, among other things, enable us to verify or update information contained in our records and to better customize the Service for you.


We may change our ownership or organizational structure while providing the Service. We may also sell certain assets associated with the Service. In such event, we may transfer some or all of your information to an entity acquiring all or part of our assets or to another entity with which we have merged. Under such circumstances, we would request the acquiring party to follow the practices described in this Privacy Policy. Nevertheless, we cannot promise that an acquiring party or the merged entity will have the same privacy practices or treat your information the same as described in this Privacy Policy.

Law Enforcement, Legal Process, and Emergency Situations

We may use or disclose your Personal Information to third parties if required to do so by law or on the good-faith belief that such action is necessary to (a) conform to applicable law or comply with legal process served on us or the Service; (b) protect and defend our rights or property, the Service or our users, or (c) act to protect the personal safety of us, users of the Service or the public.

Business Purposes

We may disclose de-identified versions of your Personal Information and other data (“De-Identified Information”) in aggregated or non-aggregated forms with institutional clients, partners and contractors for any purposes related to our business practices. Permitted uses of your De-Identified Information may include but are not limited to, product development, marketing or research made available to the public.

Confidentiality and Security

We have taken reasonable and necessary steps to ensure that all Personal Information collected will remain secure. These steps include physical, electronic, and administrative procedures to safeguard and help prevent unauthorized access or disclosure, maintain data security and correctly use the Personal Information that we collect.

The processing of the Personal Information we collect is carried out using computers and/or IT enabled tools, following organizational procedures and modes appropriate and necessary to providing the Service.

It is important that you help protect the privacy of your own information. We strongly recommended that you take precautions to protect the security of any Personal Information that you transmit by using device security features, encryption and other techniques to prevent unauthorized interception of your Personal Information. You are responsible for the security of your information when using unencrypted, public or otherwise unsecured networks.

Please understand, that while we try our best to safeguard your Personal Information once we receive it, no transmission of data over the Internet or any other public network can be guaranteed to be 100% secure.

Your Obligations to Keep Access Rights

As a registered user of the Service, you are solely responsible for the security and confidentiality of your username and password and you are solely responsible for any and all activities that occur under your account.

Governing Law

The Service is located, published and directed to individuals located in the United States, and our policies are directed at compliance with those laws.  If you are located outside the United States, you should be aware that your Personal Information will be transferred to the United States, the laws of which may be deemed by your country to have inadequate data protection. If you are uncertain whether this Privacy Policy conflicts with the applicable local privacy laws where you are located, you should not use the Service.

Legal Action

Your Personal Information may be used for legal purposes by Altarum, in Court or in the stages leading to possible legal action arising from improper use of the Service. By using the Service, you declare to be aware that we may be required to reveal Personal Information upon request of public authorities.

Questions and Suggestions

If you have any questions or suggestions about this Privacy Policy, please contact us by email at

This Privacy Policy was last updated on June 29, 2021.