Privacy Policy

The National Institutes of Health (NIH) is firmly committed to maintaining the confidentiality of your personal information in all of our activities. Every reasonable effort will be made to maintain the privacy and security of all personal information in our possession. Access to personal information will be limited to a small number of NIH and contractor employees who are working directly on PregSource™. These individuals are specially trained to comply with Federal confidentiality and security requirements.

For the purposes of this document, "Site" refers to the PregSource™ Site and any associated mobile apps. PregSource™ is owned by the NIH and is currently operated under contract with Leidos Inc. and its affiliated subcontractor, Invitae Corporation (collectively referred to as the "Contractor"). The NIH and its Contractor respect your privacy and have written the Privacy Policy (the "Privacy Policy") so that you are aware of the information PregSource™ collects from you, how that information is protected, and how it is used. If you have any questions or comments regarding the Privacy Policy, or you feel that PregSource™ is not abiding by its posted Privacy Policy, please contact us at: This email address is being protected from spambots. You need JavaScript enabled to view it..

You must read this Privacy Policy and the Site terms of use (the "Terms and Conditions") prior to using any portion of the PregSource™ Site located at https://PregSource.nih.gov. By using the Site, you agree to all the terms of the Privacy Policy and Terms and Conditions. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Site. An updated copy of this policy will always be available on the Site.

We define personal information to include: name(s), email address, mailing address, date of birth, and other non-public information included in your correspondence with us.

Purpose

The NIH Privacy Policy establishes policies and procedures for ensuring the privacy and protection of personal information collected, stored, used, maintained and disseminated via NIH Websites. This policy applies to NIH Internet Websites that are developed and/or maintained, by NIH staff or by contract personnel. This policy does not apply to internal agency activities (such as on intranets, applications, or interactions that do not involve the public) or to activities that are part of authorized law enforcement, national security, or intelligence activities.

This Privacy Policy outlines the type of information PregSource™ collects from its participants. NIH reserves the right to modify the Privacy Policy at any time, and without prior notice, by posting an amended Privacy Policy and/or Terms and Conditions on the PregSource™ Site. We encourage you to review these documents periodically for any updates or changes.

Collection, Use, and Disclosure of Information

Collection of Information. All of the information you provide to PregSource™ will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent, unless otherwise required by law.

Use and Disclosure of Information. The goal of PregSource™ is to make the information you provide searchable, while protecting your identity. De-identified data (information where all personal identifiers such as name, address, and email have been removed) will be made available to researchers in the hope that analyses of these data will lead to research advances to improve health for pregnant women.

At any time, you have the right to withdraw your information from PregSource™. You may exercise this right by contacting the PregSource™ Coordinators at This email address is being protected from spambots. You need JavaScript enabled to view it.. Your account can be deactivated, and the identifying information will be removed. Please note that we will not be able to retrieve any de-identified data accessed by researchers or viewed by PregSource™ participants before your request for removal was received and processed.

Protection of User Information

To protect your information, NIH employs state-of-the-art practices to protect our computer network and servers from intrusion.

The first step in protecting your information starts with you. Whenever and wherever you use your passwords, ID numbers, or other special access features on the Site, you should take special care to safeguard them. In addition, if you are accessing PregSource™ via a cell phone or other mobile device, having a passcode on your device will improve your security. To help with this, the Site has special password requirements that must be met.

Also as part of protecting your information, PregSource™ complies with:

  • The Code of Federal Regulations, 45 CFR Part 46 subpart D

  • Federal Information Security Management Act of 2002 (FISMA), 44 U.S.C. § 3541

To help us protect your privacy, PregSource™ obtained a Certificate of Confidentiality from the National Institutes of Health (NIH). This certificate means we do not have to identify you in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. For example, if there is a court subpoena, the certificate allows PregSource™ researchers to keep your identity private, except as explained below.

The certificate does not mean the government approves or disapproves this research. The certificate does not allow PregSource™ researchers to resist a demand for information used to audit or evaluate PregSource™ from the government agency sponsoring the project: the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), part of NIH.

And, even though the certificate protects us and you from forcible release of information about your participation in this study, we may report information about you to health care providers and/or appropriate authorities if we suspect that you may harm yourself or others. The certificate also does not prevent you, or a member of your family, from voluntarily releasing information about you or your involvement in this research. If an insurer, health care provider, or other person gets your written consent to receive research information, then PregSource™ researchers will not use the certificate to withhold your information.

Additional information about this is available in Frequently Asked Questions (FAQs) via the PregSource™ home page.

In compliance with these regulations, our database security features target multiple levels, including the:

  • Data element (e.g., restricted access to fields)

  • User (e.g., password authentication access)

  • Application (e.g., role-based access to features, access audit trails), and

  • Hosting services (e.g., firewall, secure sockets layer).

Taken together, these features ensure access control, audit control, data integrity, user authentication, and transmission security. PregSource™ personnel ensure exported datasets are de-identified as defined in the HIPAA privacy regulation [45 C.F.R. §164.514 (b)(2)].

All server requests are transmitted over Secure Sockets Layer (SSL), which provides a secure connection between internet browsers and websites, allowing you to transmit private data online. All servers have several layers of data and access protection:

  1. (1) A dedicated, managed Cisco router firewall,
  2. (2) A redundant array of independent disks (RAID) Level 5 is used for data storage to ensure that data will not be lost if a hard drive fails between backups,
  3. (3) A system level backup is performed nightly and retained for 2 weeks and is stored in the data center,
  4. (4) A database level backup is performed nightly and retained for 2 months and is stored at the data center.

PregSource™ de-identified data (anonymized to remove personal information) may be requested by doctors, scientists, and other interested parties to conduct research on pregnancy and/or to determine numbers of participants who may be eligible to participate in other studies or clinical trials. The PregSource™ Operations Committee will review data requests to ensure they meet strict research requirements and have required data security measures in place. All approved researchers must sign a data use agreement stating that they will not try to identify any of the PregSource™ participants in the data.

Participant information will be stored in the PregSource™ database for an indefinite period of time. If/when PregSource™ closes, the information will be retained in a secure NIH database.

Ownership of Information

All of the information you provide to PregSource™ is owned by you. By signing the consent form, you agree to grant PregSource™ the right to maintain, use, and disclose your de-identified data as set forth in this Privacy Policy and the Terms and Conditions. Your information may contribute to the development of inventions or commercial products from which others may derive economic benefit. You will have no rights to any inventions, commercial products, or other such discoveries, and you will receive no economic benefit.

Site Links

The PregSource™ Site may contain links to other NIH and PregSource™ Partner websites. This Privacy Policy applies solely to information collected on or submitted to the PregSource™ Site. PregSource™ is not responsible for the privacy practices of other sites linked to the Site. PregSource™ encourages users to read the privacy policies of other websites when they connect to them.

Communications from PregSource™

From time to time, the NIH and/or PregSource™ will notify participants and users of updates and other valuable information about PregSource™ and related health information. By using the PregSource™ Site, or registering or subscribing for services provided on or through the Site, and giving your permission to PregSource™ to email you new findings about pregnancy and newborn care in your Account Profile Contact and Sharing Preferences, users consent to being contacted by the PregSource™ Coordinators, and to receiving such updates and information. Such emails will coming directly from PregSource™, will clearly be labeled as from PregSource™, and will include instructions on how to unsubscribe from future emails.

Required Disclosures

By signing the consent form, you understand and agree that PregSource™ may disclose information provided by you, if in its good faith believes that such disclosure is required by applicable law.

Contact Us and Account Registration

If you contact or join PregSource™, you may be asked for any of the following: name, password, email address, email subject, a message containing your inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of an account registration). PregSource™ stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.

Children under the Age of Thirteen (13)

PregSource™ shall comply with the Children’s Online Privacy Protection Act of 1998 (COPPA) which restricts the marketing of products and services online to children under 13. PregSource™ is unable to prevent children under the age of thirteen (13) from visiting the Site; however, no part of the Site is directed at, or intended for, persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Site at any time or in any manner. By providing personal identifiable information through the Site (including, but not limited to, your name and email address), you represent and warrant that you are at least (18) years of age, have the capacity to consent to participation, and that you agree to comply with the Privacy Policy. If, at any time, PregSource™ learns that personally identifiable information has been collected from persons under the age of thirteen (13) without parental or legally authorized representative consent, PregSource™ will take the appropriate steps to delete such information.

Change of Control

In the event that the NIH Contractor is involved in a bankruptcy, merger, acquisition, reorganization, or sale of assets, your information will not be sold or transferred as part of that transaction. Ownership of the PregSource™ database and related information will remain with NIH, even if the Contractor or ownership of the Contractor changes.

Notification of Changes

You should review the Privacy Policy whenever you use the Site in order to be aware of the ways that your information is used. The NIH, through its Contractor, reserves the right to change the Privacy Policy at any time, without prior notice.