CHIRP™ Study Privacy Policy

Epidemic Answers’ Privacy Policy for The Documenting Hope CHIRP(TM) 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(TM) Survey 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 was 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 Epidemic Answers for the purposes of conducting the Documenting Hope CHIRP(TM) Study. By participating in this study, 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 Epidemic Answers’ customer agreement with LivingMatrix, Inc, all Data, including study participant’s health information and data generated by Epidemic Answers’ research studies, is accessed and controlled exclusively by Epidemic Answers. LivingMatrix will never transfer Data to a third-party without direction and permission of Epidemic Answers. LivingMatrix employees will not actively view Data. Any exposure to personal information is incidental to providing the services.

Users:
This survey is intended for use by adults who are adults 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. 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(TM) Study 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, 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 for registration or study procedures; request for feedback about the study.
  • Analyze, benchmark and conduct research on de-identified (anonymous) information provided in the survey. LivingMatrix is authorized by Epidemic Answers 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 a 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@epidemicanswers.org.

Disclosures
We understand the sensitivity around the data we are collecting for this study. We have obtained a Certificate of Confidentiality from the National Institutes of Health to help us protect your privacy. Epidemic Answers can use this Certificate to legally refuse to disclose information that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. Beyond this protection, we may be required to disclose your Personal Information due to legal or regulatory requirements.

Notification of Changes: We reserve the right to change this Privacy Policy from time to time, and 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 Epidemic Answers through LivingMatrix’s service. By participating in the CHIRPTM Survey and using LivingMatrix’s service you agree to the terms set forth below. You understand and agree that Epidemic Answers may revise the information contained on this site and Terms of Use at any time and 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 survey 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 Epidemic Answers or LivingMatrix. The transmission and receipt of content, of any sort, to Epidemic Answers or LivingMatrix via the internet, email or other means does not constitute a doctor patient, therapist patient or other health care professional relationship between you and Epidemic Answers or LivingMatrix. By using this site, you agree that reliance on the information provided by Epidemic Answers and LivingMatrix is solely at your own risk.

YOU EXPRESSLY AGREE THAT USE OF THE SURVEY AND REPORTS IS ENTIRELY AT YOUR OWN RISK. THE SURVEY 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, EPIDEMIC ANSWERS DISCLAIMS ALL WARRANTIES, EXPRESS OR IMPLIED, IN CONNECTION WITH THE SITE AND SERVICES AND YOUR USE THEREOF. EPIDEMIC ANSWERS 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. EPIDEMIC ANSWERS 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 EPIDEMIC ANSWERS, BE LIABLE FOR DIRECT, INDIRECT, INCIDENTAL, SPECIAL, CONSEQUENTIAL OR EXEMPLARY DAMAGES (EVEN IF EPIDEMIC ANSWERS HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES), RESULTING FROM ANY ASPECT OF YOUR USE OF SURVEY 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 EPIDEMIC ANSWERS’ RESEARCH STUDIES. YOU SPECIFICALLY ACKNOWLEDGE THAT EPIDEMIC ANSWERS 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. Specifically, LivingMatrix is a HIPAA-compliant, cloud-based patient information management system that provides HIPAA-compliant management and storage of data, password and encryption protection for all users. LivingMatrix is built upon the Datica Compliant Cloud platform.

Datica Compliant Cloud offers an application development environment that uses a methodology based on NIST800-66 to ensure the environment’s control posture is designed and operating in accordance with the Administrative, Physical, and Technical safeguards defined by HIPAA. Datica has been assessed against the IT security-related requirements of HITECH and Omnibus, including the Final Breach Notification requirements.
Strict logical access controls are in place. Data is transmitted via an SSL encrypted session and a series of API calls are made to the database servers where electronic patient health information resides. Datica utilizes sophisticated logic to separate Individually Identifiable Information from the corresponding medical information. As a result of this mature security design, the risk of an unauthorized user gaining access to both data stores, while successfully linking the data, is mitigated.

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@epidemicanswers.org
  • Address: Epidemic Answers, 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.