Privacy Policy
Effective Date: June 24, 2026
Who We Are
HealthMeasures is the dissemination and implementation hub for PROMIS®, NIH Toolbox®, Neuro-QoL™, and ASCQ-Me®, operated by Northwestern University’s Feinberg School of Medicine (“HealthMeasures,” “we,” “us,” or “our”). This Privacy Policy explains how we collect, use, share, and protect information collected through HealthMeasures.net (the “Website”).
This Privacy Policy does not cover the practices of third-party sites we link to, which maintain their own privacy policies.
1. Information We Collect
Information you provide directly, such as when you:
– Create an account or register with the Website
– Contact us, sign up for a newsletter, or request information
Information required to download measures. To access PDF versions of HealthMeasures instruments, you must accept our Terms of Use and provide your name and email address. By doing so, you acknowledge that this information will be shared with the PROMIS Health Organization (PHO), as described in Section 3 below.
Information collected automatically, such as IP address, browser type, pages visited, and similar usage data, collected via cookies or similar technologies (see Section 4).
2. Why We Use Your Information
We use the information we collect to:
– Provide access to measures, instruments, and related materials you request
– Maintain accurate internal records and administer accounts
– Respond to inquiries and provide support
– Improve the Website and our services
– Send you information about updates, new measures, or relevant news (you may opt out at any time)
– Compile de-identified or aggregated data for scientific, reporting, or quality-improvement purposes
– Comply with legal obligations
We do not sell your personal information.
3. How We Share Your Information
We share information in the following circumstances:
PROMIS Health Organization (PHO). When you download a PDF of a HealthMeasures instrument and accept our Terms of Use, your name and email address are shared with PHO so that PHO can add you to its newsletter mailing list. You may unsubscribe from PHO’s newsletter at any time using the unsubscribe link included in each newsletter email.
Service providers. We share information with vendors who perform services on our behalf, such as website hosting, IT support, and email delivery, under obligations to protect your information.
Northwestern University. As a program operated within Northwestern’s Feinberg School of Medicine, certain information may be accessible to or shared with Northwestern for compliance, legal, security, or administrative purposes.
Legal requirements. We may disclose information if required to do so by law, regulation, legal process, or government request.
We do not share your information with third parties for their own independent marketing purposes.
4. Cookies and Analytics
We use cookies and similar technologies to operate the Website and understand how it is used.
We use Google Analytics to help us understand how visitors use the Website, including pages viewed, general location (such as city or region), and how visitors arrived at the Website. Google Analytics collects this information across your visits using cookies. This information helps us improve the Website’s content and navigation. Google’s use of data collected through Analytics is governed by Google’s own privacy policy.
You can manage cookies through your browser settings. Disabling cookies may limit some Website functionality. This site does not currently respond to Do Not Track (DNT) browser signals.
5. Data Security
We use reasonable administrative, technical, and physical safeguards designed to protect your information, including encryption for sensitive information transmitted online and restricted access to personally identifiable information. No method of transmission or storage is completely secure, and we cannot guarantee absolute security.
International data transfers. The Website is operated from the United States. Information you provide is stored and processed on servers located in the United States. If you are accessing the Website from outside the United States, your information will be transferred to and processed in the United States, where data protection laws may differ from those in your country.
6. Data Retention
We retain personal information for as long as necessary to fulfill the purposes described in this policy, comply with legal obligations, or as required by Northwestern University’s records retention policies.
7. Your Rights
Depending on your location, you may have the right to:
– Request access to the personal information we hold about you
– Request correction of inaccurate information
– Request deletion of your information
– Object to or request restriction of certain processing
– Withdraw consent where processing is based on consent
To exercise any of these rights, contact us using the information in Section 11. We may need to verify your identity before fulfilling a request, and some requests may be limited by legal or contractual obligations (for example, records tied to measure licensing).
8. Children’s Information
The Website is intended for a general professional and research audience. We do not knowingly collect personal information from children under 13 without parental consent.
9. Third-Party Links
The Website may contain links to other websites. We are not responsible for the privacy practices or content of third-party sites. We encourage you to review the privacy policy of any site you visit.
10. Changes to This Policy
We may update this Privacy Policy from time to time. Material changes will be posted on this page with an updated effective date. Continued use of the Website after changes are posted constitutes acceptance of the revised policy.
11. Contact Us
If you have questions about this Privacy Policy or our data practices, contact us at: help@healthmeasures.net
Department of Medical Social Sciences
Northwestern University Feinberg School of Medicine
625 N. Michigan Avenue, Suite 2100
Chicago, IL 60611