CHIRP Study Privacy Policy

Documenting Hope’s Privacy Policy for The CHIRP Study
The following Privacy Policy details the kind of information we may gather from you when you participate in this study and how we may use and disclose the information.

To be clear about the terminology we are using, when we use the phrase “Personal Information” in this Policy, we mean information about you that is personally identifiable, like your name, address, e-mail address, or phone number, as well as other non-public information that is associated with this personal information. When we use the phrase “Anonymous Information” or “De-identified Information” in this Policy, we mean information that is not associated with or linked to your Personal Information. Anonymous Information does not enable identification of or contact with individual persons.

By participating in this study, you are accepting the policies and practices described in this Policy. Each time you enter the CHIRP Questionnaire Site, you agree and expressly consent to our collection, use, and disclosure of the information that you provide as described in this Policy.

Your Personal Information may be processed by us in the country where it is collected as well as other countries (including the United States) where laws regarding processing of Personal Information may be less stringent than the laws in your country.

This Privacy Policy, as amended from time to time (the “Privacy Policy”), governs the collection and use of your personal information by Documenting Hope for the purposes of conducting the Documenting Hope CHIRP Study or administering the CHIRP Questionnaire. By participating in this study or using the questionnaire, you consent to the collection, use, and disclosure of your personal information in accordance with the terms of this Privacy Policy. This Privacy Policy is governed by the laws of the State of Connecticut irrespective of your location. Per Documenting Hope’s customer agreement with Smart Survey Assist, the software used to host the questionnaire, all Data, including questionnaire user or study participant’s health information and data generated by Documenting Hope’s research studies, is accessed and controlled exclusively by Documenting Hope. Smart Survey Assist will never transfer Data to a third-party without direction and permission of Documenting Hope. Smart Survey Assist employees will not actively view Data. Any exposure to personal information is incidental to providing the services.

Users:
This Questionnaire is intended for use by adults who are parents or legal guardians. We do not knowingly collect Personal Information directly from children under the age of 18. NOTICE TO CHILDREN UNDER THE AGE OF 15 AND THEIR PARENTS OR GUARDIANS: If you are under the age of 15, YOU MAY NOT REGISTER FOR THIS STUDY OR USE THIS QUESTIONNAIRE ON YOUR OWN. Please do not send us your personal information, including your email addresses, name, and/or contact information. If you want to contact us, you may only do so through your parent or legal guardian.

Type of Information Collected: As a participant in the CHIRP Study or a user of the Questionnaire ,you will be asked to provide responses to questions about you and your child (or a child under your guardianship). The type of personal information collected may include, but is not limited to:

HEALTH HISTORY OF THE CHILD’S PARENTS AND FAMILY

CONCEPTION, PRENATAL, BIRTH, AND NEONATAL HISTORY

CHILD’S DETAILED HEALTH PROFILE

CHILD’S HEALTHCARE AND TREATMENT HISTORY

CHILD’S ENVIRONMENT & LIFESTYLE

How Your Information is Used. We may use your Personal Information to:

  • Contact you regarding additional research studies that may be of interest.
  • Contact you via email or other means for reminders, including reminders to complete the questionnaire or request for feedback about the study or questionnaire.
  • Analyze, benchmark, and conduct research on de-identified (anonymous) information provided in questionnaire answers.
  • Smart Survey Assist is authorized by Documenting Hope to access data and personal health information as it relates to support and performance of their site and services, but is prohibited from further use and/or distribution unless explicitly agreed to between parties.

Protecting Your Personal Information:
We recognize that protecting your privacy is important to you. For this reason, we are committed to protecting your Personal Information in a variety of ways. We have taken certain security protections in safeguarding your Personal Information. However, no method is 100% safe. While we strive to use commercially acceptable means to protect your Personal Information, we cannot guarantee its security. Therefore, we assume no liability regarding the theft, loss, alteration or misuse of personal or other information, including without limitation such information that we have provided to third parties, or with regards to the failure of a third party to abide by the privacy policy or agreement between us and a third party.

Your Choice:
We may also send you any legally required notifications and certain notifications, including but not limited to, service-related notices or notices regarding a change to any of our policies. You can opt-out of receiving these and any future communications from us, by emailing us at info@documentinghope.com.

Notification of Changes:
We reserve the right to change this Privacy Policy from time to time at our sole discretion. We may send you a notice regarding material changes to this Privacy Policy or our site. You should make note of the “last updated date” at the beginning of this Privacy Policy. With this information, you should be able to identify if the Privacy Policy has been updated recently.

Disputes:
Any disputes regarding your privacy are subject to this Privacy Policy and our Terms of Use, including but not limited to, any provisions related to indemnification, limitations on damages, and choice of law.

Terms of Use:
This Terms of Use (“Terms of Use”) governs the information and content provided by Documenting Hope through Smart Survey Assist’s service. By participating in the CHIRP Questionnaire and using Smart Survey Assist’s service you agree to the terms set forth below. You understand and agree that Documenting Hope may revise the information contained on this site and Terms of Use at any time without notice to you. You understand and agree that you are solely responsible for reviewing the Terms of Use from time to time. The contents of this Questionnaire and personalized reports do not constitute legal or medical advice, counseling, or other professional services and are not a substitute for professional diagnosis or treatment. You should always seek advice from a qualified health provider regarding a medical condition. If you have an emergency, you should contact 911 or your doctor immediately. Do not disregard medical advice or delay seeking such advice based on the information found on this site or in any reports or communications from Documenting Hope or Smart Survey Assist. The transmission and receipt of content, of any sort, to Documenting Hope or Smart Survey Assist via the internet, email or other means does not constitute a doctor patient, therapist patient or other health care professional relationship between you and Documenting Hope or Smart Survey Assist. By using this site, you agree that reliance on the information provided by Documenting Hope and Smart Survey Assist is solely at your own risk.

YOU EXPRESSLY AGREE THAT USE OF THE QUESTIONNAIRE AND REPORTS IS ENTIRELY AT YOUR OWN RISK. THE QUESTIONNAIRE AND REPORTS AND THE INFORMATION PROVIDED HEREIN ARE PROVIDED ON AN “AS IS” OR “AS AVAILABLE” BASIS, WITHOUT ANY WARRANTIES OF ANY KIND. TO THE FULLEST EXTENT PERMITTED BY LAW, DOCUMENTING HOPE DISCLAIMS ALL WARRANTIES, EXPRESSED OR IMPLIED, IN CONNECTION WITH THE SITE AND SERVICES AND YOUR USE THEREOF. DOCUMENTING HOPE MAKES NO WARRANTIES OR REPRESENTATIONS ABOUT THE ACCURACY, COMPLETENESS, TIMELINESS, RELIABILITY, QUALITY OR EFFECTIVENESS OF THIS SITE’S OR SERVICES CONTENT OR THE CONTENT OF ANY SITES LINKED TO THIS SITE, AND ASSUMES NO LIABILITY OR RESPONSIBILITY FOR ANY (I) ERRORS, MISTAKES, OR INACCURACIES OF THE SITE’S CONTENT, (II) ANY INTERRUPTION OR CESSATION OF TRANSMISSION TO OR FROM THIS SITE, AND (III) ANY BUGS, VIRUSES, TROJAN HORSES, OR THE LIKE WHICH MAY BE TRANSMITTED TO OR THROUGH THE WEBSITE BY ANY THIRD PARTY. DOCUMENTING HOPE DOES NOT WARRANT, ENDORSE, GUARANTEE, OR ASSUME RESPONSIBILITY FOR THE CONTENT CONTAINED IN OR YOUR USE OF ANY HYPERLINKED THIRD PARTY WEBSITE. IN NO EVENT SHALL DOCUMENTING HOPE, BE LIABLE FOR DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL OR EXEMPLARY DAMAGES (EVEN IF DOCUMENTING HOPE HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES), RESULTING FROM ANY ASPECT OF YOUR USE OF QUESTIONNAIRE OR REPORTS, WHETHER THE DAMAGES ARISE FROM USE OR MISUSE OF THE WEBSITE, REPORTS, FROM INABILITY TO USE THE WEBSITE, OR THE INTERRUPTION, SUSPENSION, MODIFICATION, ALTERATION, OR TERMINATION OF THE WEBSITE. SUCH LIMITATION SHALL ALSO APPLY WITH RESPECT TO DAMAGES INCURRED BY REASON OF ANY THIRD PARTY LINKS ON THE WEBSITE OR PARTICIPATION IN DOCUMENTING HOPE’S RESEARCH STUDIES. YOU SPECIFICALLY ACKNOWLEDGE THAT DOCUMENTING HOPE WILL NOT BE LIABLE FOR THE DEFAMATORY, OFFENSIVE, OR ILLEGAL CONDUCT OF ANY THIRD PARTY AND THAT THE RISK OF HARM OR DAMAGE FROM THE FOREGOING RESTS ENTIRELY WITH YOU.

Third – Party Links
The Sites may link to websites operated by third parties that we do not control. We do not monitor, control, or endorse the information collection or privacy practices of any third parties. We strongly encourage you to become familiar with the privacy practices of every website you visit and to contact them if you have any questions about their respective privacy policies and practices. This Policy applies solely to information collected by us through the Sites or Services and does not apply to these third-party websites. The ability to access information of third parties from the Sites or Services, or links to other websites or locations, is for your convenience only and does not signify our endorsement of such third parties, their products, services, websites, locations, or their content.

Security:
We place a priority on the security of Personal Information, and we undertake reasonable security measures to protect your data. All research data and records will be stored electronically on a secure database with encryption and password protection to help prevent unauthorized access to your personal information.

Smart Survey Assist (SSA) is hosted in the Amazon Web Services (AWS) cloud within a security-focused environment designed to support compliance with the HIPAA Security Rule, including applicable Administrative, Physical, and Technical safeguards (45 CFR §§ 164.308, 164.310, and 164.312), using implementation guidance consistent with NIST SP 800-66. The platform is architected to protect the confidentiality, integrity, and availability of electronic protected health information (ePHI) and to support healthcare regulatory requirements established under the HITECH Act and the HIPAA Omnibus Rule, including breach notification obligations. Security controls are implemented across the SSA application, supporting services, and underlying infrastructure.

SSA implements role-based access controls (RBAC), least-privilege principles, and logical access restrictions to ensure that access to systems and ePHI is limited to authorized users and services based on job function and operational need. All data transmitted between users, application components, and backend services is protected using industry-standard encryption in transit (TLS). Communications with databases and supporting services occur through authenticated and secured application programming interfaces (APIs).

ePHI stored within SSA is encrypted at rest using industry-standard encryption mechanisms provided by AWS. Survey data and associated system data are stored in encrypted relational database services (Amazon RDS), with encryption enabled at rest and access restricted to authorized application components and personnel. These controls support the HIPAA Security Rule requirements for access control, transmission security, and data protection.

To further reduce the risk of unauthorized use or disclosure of ePHI, SSA is designed to minimize data exposure by logically separating identifying information from survey or clinical content. The ability to re-associate identifying data with survey responses is restricted to authorized components and users with a legitimate business or clinical need. This defense-in-depth architecture supports HIPAA confidentiality safeguards by reducing the likelihood that an unauthorized party could access and successfully correlate sensitive data.

How To Contact Us:
If you have any questions regarding privacy or this Policy, you may contact us as follows:

  • Telephone: 833-935-5543
  • Email: info@documentinghope.com
  • Address: Documenting Hope, Inc. 360 Bloomfield Avenue, Suite 301 Windsor, CT 06095

Privacy Policy Changes:
We reserve the right to change, modify, add, or remove portions of this Policy at any time and without prior notice, and any changes will become effective immediately upon being posted unless we advise you otherwise. However, we will not use your Personal Information in a way that is materially different than the uses described in this Policy without giving you an opportunity to opt-out of such differing uses. Your continued use of the Site or Services after this Policy has been amended shall be deemed to be your continued acceptance of the terms and conditions of the Policy, as amended. We encourage you to bookmark this Web page and review this Policy regularly.