Privacy Policy

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:

• Keep your medical information private.  Other than for reasons described in this notice, this organization agrees not to use or disclose your identifiable health information to individuals without your authorization.
• Provide you with this notice of your rights and our legal commitment and privacy practices with respect to the information we collect and maintain about you.
• Abide by the terms of this notice and notify you if we are unable to grant your requested restrictions or reasonable desires to communicate your health information by alternative means or to alternative locations.
• Take all possible steps to safeguard your health information.
• Ensure that all healthcare professionals and individuals with privileges, including staff members abide by our privacy policy and practices.

Understanding our policy for specific disclosures

• Authorization – As a research participant, your health information will be disclosed to those you have specifically authorized to receive this information and wherever possible the information will be pseudo-anonymized. 
• Business Associates – Some or all of your health information may be subject to disclosure through contracts for services to assist the study in conducting the clinical research study.  To protect your health information, we require these Business Associates to follow the same standards held by this office through terms detailed in a written agreement.
• Limited Data Set – We may use or disclose information about you without your authorization as part of a “limited data set” which includes limited information (such as a city, but not personally identifying information such as your name or address) for research purposes.  The recipient of this information must sign a data use agreement to restrict the use of this information.
• Marketing – This office reserves the right to contact you with appointment reminders or information about additional research opportunities.
• Fund-raising – We reserve the right to contact you as part of fundraising efforts.
• Food and Drug Administration (FDA) – This office is required by law to disclose health information to the FDA related to the data collected in a clinical research trial conducted with investigational drugs or related to any adverse events or compliance violations occurring in the study.
• Public Health – This office is required by law to disclose information to The Office of Research Integrity (ORI) as required, which is charged with tracking mandatory reports of research integrity, 
• Law Enforcement – (1) Your health information will be disclosed for law enforcement purposes as required under state law or in response to a valid subpoena. (2) Provisions of federal law permit the disclosure of your health information to appropriate health oversight agencies and authorities when a report is made in good faith that there has been unlawful conduct or violations of professional clinical standards.
• Treatment – Your health information is used for research purposes.
• Service providers - We may share your personal information with third parties that provide services that help us with our business activities (such as reimbursement processing, hosting and storage, imaging, database management services and legal and other professional advice). We authorize these third parties to access your personal information to the extent reasonably necessary for them to provide their services. If required by applicable law, we enter into specific data protection agreements with them. Our service providers may be located in the EU, U.S, Canada, or other foreign jurisdictions.

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:

·  Amazon Web Services

· Auth0

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.