Effective Date: 03-Jan-2023
The Institute of Neurodegenerative Disorders (IND) is committed to safeguarding your privacy and personal data. This notice is provided to describe how information about you might be disclosed and how you can get access to this information. This Privacy Policy applies to all information received by IND, both online and offline, any electronic, written communication you share with us, and any information you provide to service providers operating on behalf of IND.
Understanding your health record
A record is made each time you visit one of our qualified clinical sites participating in a clinical research trial. Information about your examination and test results are recorded. These records provide information about your research visit pertaining to the applicable clinical study you have consented to participate in.
Understanding what information is retained in your record, collected and how that information may be used or shared is defined in the associated clinical study informed consent document.
IND is a HIPAA waived entity. The clinical sites involved in the PPMI study who are required to comply with HIPAA have their own policies available for review
What data we collect
The data collected by the portal includes the personal information you directly submit to us as part of registration process, including your name, date of birth, email address etc. This information is used to help you register to the portal, provide you with relevant information about the study, programs and services, and to tailor and promote opportunities for engagement to meet your interests.
If you wish to have your personal information removed from our system, please contact us at support@myppmi.org and your information will be removed. However, once you sign the informed consent to participate in a specific research study, the data collected during your study enrollment cannot be removed.
Understanding your privacy rights
Your clinical research data record is the physical property of the clinical research study sponsor and those defined in the informed consent.
You may cancel your permission to use and disclose your health information at any time by sending written notice to the study investigator. Upon receiving the written notice, the study team will no longer use or disclose your health information and you will not be able to stay in the study. Information that has already been gathered may need to be used and given to others for the validity of the study.
Data security
At IND, all access to the computing environment is limited by a least-privilege model. This principle ensures that only those employees who need to access sensitive data for their job function will have access. In addition, all access to these systems is logged and requires multi-factor authentication (MFA) where applicable, greatly limiting the threat of compromised accounts.
Data Breaches
The IND servers are located in a cloud-based locked, secure environment, and computer systems are maintained in accordance with industry standards to secure information. Consistent with regulations of the United States and European Union, IND takes many technical precautions to keep your identifiable data secure against security breaches. However, if there is a breach, IND will comply with its regulatory obligations.
Our Institutions’ Privacy Practices
We understand that health information about you is personal, and we are committed to protecting that information. In meeting legal requirements and the organization’s efforts to protect your health information we:
Understanding our policy for specific disclosures
If we have a change in policy
The clinical study sponsor or IND reserves the right to change its practices and affect new policy to enhance the privacy standards of research participant records. You will be informed of changes at your research visits. This office will also post changes to this notice on our website.
For additional information or to report a problem
For further explanation of this notice, you may contact our Privacy Officer at
(203) 590-5600. If you believe your privacy rights have been violated, you have the right to file a complaint with this office by contacting the individual above, or by contacting the Secretary of the U.S. Department of Health and Human Services or IRB (institutional Review Boards), with no fear of retaliation by this office.
SUBPROCESSORS:
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IND is not responsible for the privacy and security practices of any other website(s) noted in this privacy policy, or the content contained in it.
Institute for Neurodegenerative Disorders
60 Temple Street, Suite 8B, New Haven, Connecticut 06510, United States
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