Brain Imaging
How to Participate


The researchers at Institute for Neurodegenerative Disorders (IND) recognize that privacy is very important to individuals who voluntarily participate in studies.  They are committed to protect any personal information that is provided through the research process.  This includes participant's names, addresses, telephone numbers, email addresses and any information that can be linked to an individual.  IND has a tradition of upholding the highest ethical standards in its business practices.  IND strives to collect, use and disclose personal information in a manner consistent with the laws of countries in which it does business.  IND’s Notice of Privacy Practices describes its privacy policies as prescribed by US regulations under the Health Insurance Portability and Accountability Act (HIPAA). 

The Safe Harbor Privacy Policy (the "Policy") below specifically sets forth the privacy principles that IND follows with respect to transfers of personal information from the European Union (EU) to IND.

The United States Department of Commerce and the European Commission have agreed on a set of data protection principles and frequently asked questions (the "Safe Harbor Principles") to enable U.S. organizations such as IND to satisfy the EU requirement.  This set of principles requires that personal information transferred from the EU to the United States be adequately protected. Consistent with its pledge to protect personal privacy, IND adheres to the Safe Harbor Principles.

This Policy applies to all personal information received by IND in the United States from the EU, in any format including electronic, paper or verbal.

The following definitions shall apply throughout this Policy:

  • "Agent" means any third party that uses personal information provided to IND to perform tasks on behalf of and under the instructions of IND.
  • "IND" means The Institute for Neurodegenerative Disorders, its successors, subsidiaries, divisions and groups in the United States.
  • "Personal data" and "personal information" are data about an identified or identifiable individual that are within the scope of the EU Directive, received by a U.S. organization from the European Union, and recorded in any form.  Personal information does not include information that is de-identified (i.e. encoded) or that which is publicly available. 

The privacy principles in this Policy are based on the Safe Harbor Principles.

NOTICE: Research participants are informed of the purposes for which their personal information is used, the types of non-agent third parties, if any, to which IND discloses that information, and the choices and means, if any, that IND offers individuals for limiting the use and disclosure of their personal information. Notice is provided in clear and conspicuous language when individuals are first asked to provide personal information, or as soon as practicable thereafter, and in any event before IND uses the information for a purpose other than that for which it was originally collected.

If IND receives personal information from its subsidiaries, affiliates or other entities in the EU, it will use such information in accordance with the notices such entities provided and the choices made by the individuals to whom such personal information relates.

CHOICE: Individuals have the opportunity choose to opt-out of having their personal information disclosed to a non-agent third party, or (b) to be used for a purpose other than the purpose for which it was originally collected or subsequently authorized by the individual.

For sensitive personal information, IND provides individuals the opportunity to affirmatively and explicitly (opt-in) consent to the disclosure of the information to a non-agent third party or the use of the information for a purpose other than the purpose for which it was originally collected or subsequently authorized by the individual.

IND will provide individuals with reasonable methods to exercise their choices.

DATA INTEGRITY: IND will use personal information only in ways that are compatible with the purposes for which it was collected or subsequently authorized by the individual. IND will take reasonable steps to ensure that personal information is relevant to its intended use, accurate, complete, and current.

ONWARD TRANSFERS: IND obtains assurances from its agents that they will safeguard personal information consistently with this Policy. If IND has knowledge that an agent is using or disclosing personal information in a manner contrary to this Policy, IND will take reasonable steps to prevent or stop the use or disclosure.

ACCESS AND CORRECTION: Upon request, IND will grant individuals reasonable access to personal information that it holds about them, and IND will make reasonable efforts to permit individuals to correct, amend, or delete information that is demonstrated to be inaccurate or incomplete.

SECURITY: IND will take reasonable precautions to protect personal information in its possession from loss, misuse and unauthorized access, disclosure, alteration and destruction.

ENFORCEMENT: IND will conduct compliance audits of its relevant privacy practices to verify adherence to this Policy.  In keeping with existing privacy policy, an employee that IND determines is in violation of this policy will be subject to disciplinary action up to and including termination of employment.

DISPUTE RESOLUTION: Any questions or concerns regarding the use or disclosure of personal information should be directed to the IND Privacy Officer at the address below. IND will investigate and attempt to resolve complaints and disputes regarding use and disclosure of personal information in accordance with the principles contained in this Policy. For complaints that cannot be resolved between IND and the complainant, IND agrees to participate in the dispute resolution procedures of the panel established by the European data protection authorities to resolve disputes pursuant to the Safe Harbor Principles.

Questions or comments regarding this Policy should be submitted to the IND Regulatory Department by mail or e-mail as follows:

IND Security Officer
c/o Regulatory Department
60 Temple Street, Suite 8B
New Haven, CT 06510

This Policy may be amended as required to remain consistent with the requirements of the Safe Harbor Principles.  Notice of these amendments will be made public.

EFFECTIVE DATE: January 27, 2006


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