Center for Innovative Dementia Research (CEIDER)

Last Updated: 09/13/2023

INTRODUCTION

Welcome to the CIDR-P. Your privacy is our top priority. This Privacy Policy explains the types of personal information we collect, how we use it, and the steps we take to safeguard it.

By registering for our support groups or registering in the research participation registry, you consent to the data practices described in this policy. 

Changes to This Policy: CIDR-P reserves the right to update or change this policy at any time. Any changes will be effective immediately upon posting on our website. Individuals can request removal of their information from the registry at any time, including if future changes to the privacy policy are not acceptable.

REGARDING THE RESEARCH PARTICIPATION REGISTRY

This Research Participation Registry by the CIDR-P will become active once it has been approved by an independent Institutional Review Board (IRB).

We need to collect the information required to match you with available research opportunities and also contact you regarding these opportunities. Information we collect includes personal identifying information, contact information, lifestyle information, and medical information. Completing the registration is always voluntary. We collect this information to best match registering individuals who are interested in participating in research opportunities with Institutional Review Board (IRB) approved researchers who are conducting the studies. The aim is to facilitate the speed and efficiency of research studies. All data collected is matched with a unique ID number.

The CIDR-P Research Participation Registry database is managed by the CIDR-P in compliance with the Health Insurance Portability and Accountability Act (HIPAA). By submitting the registration form, you allow the CIDR-P to include you in their secure encrypted database. Your information will be encrypted and stored securely both at rest and in transit by Microsoft security and is accessible only to the CIDR-P or authorized researchers with independent IRB and CIDR-P approval. Your data will never be sold for marketing, and you will never be contacted for purposes outside of research participation opportunities or to update your information in the future. The CIDR-P may charge researchers for access to support the costs of this database. Once you submit your registration you will be assigned a unique ID for privacy. Researchers access only blinded data (without personally identifying information) to determine if you may be a fit for their study. If the researchers are interested in your participation, they must seek permission from the CIDR-P to access identifying information matched with your unique ID through a secure gateway so that they may reach out to you directly. The CIDR-P may also reach out to you directly to inform you of specific research opportunities. The information you provide in this registry may be used as part of a research study in the future without the need for further participation if such IRB approval is granted. The information you provide in this registry may be used as part of a research study in the future without the need for further participation if such IRB approval is granted. Small incentives (e.g., coupons, etc.) may be offered to you for signing up for this registry but these incentives do not imply endorsement of any company or product, or imply that their products can cure or mitigate any disease. These companies will not see your data or contact information.

Before taking part in any study, you will get complete information about the research project. You may be contacted in any format (e.g., txt, phone, email, address, or via future phone app) to alert you of a potential research opportunity. We will attempt to match you to studies based on your interests. You may choose not to participate in a study, and you may leave any study at any time for any reason. Participation is always voluntary, and you can always opt out anytime. We also adhere to the federal government’s regulations and policies to protect the safety and rights of all research participants. By completing this registration, you have consented to understanding these terms. 

CIDR-P DEMENTIA SUPPORT GROUP POLICY

Welcome to the dementia support groups facilitated by the Center for Integrative Dementia Research and Practice (CIDR-P). This document outlines our policy to ensure that the support groups are a safe, confidential, and constructive environment for all participants. We adhere to the highest standards of privacy and professional practice.

The support groups are intended to provide and facilitate emotional, educational, and social support to individuals with dementia, as well as their caregivers, families, and friends. They are not a substitute for professional medical advice, diagnosis, or treatment. Support groups are not therapy groups and may not be led by licensed professionals. Being led by licensed professionals does not imply the support group is a therapy group.

Eligibility for the group: (1) Caregivers, family members, and friends of individuals with dementia. (2) Professionals involved in dementia care or research.

Registration and Consent: Participants may need to complete a registration form and sign an informed consent document before joining the group. There may be options for anonymous participation. Group sessions may be free or there may be a cost or a membership plan for group sessions.

Confidentiality: All discussions during the support group sessions are confidential. Participant information will not be shared outside the group without explicit consent, except when there is a risk of harm to the participant or others.

Conduct and Etiquette: Be respectful to other participants and facilitators. Use supportive and positive language. Avoid giving medical or financial advice. Individuals who do not adhere to proper etiquette will be asked to leave the group.

Facilitators: Support groups are led by qualified facilitators who have undergone training in dementia care and group dynamics.

Meetings will generally consist of: (1) Check-in and introduction. (2) Discussion of a predetermined topic. (3) Open forum for sharing and support. (4) Conclusion and announcements for future meetings.

Technology and Virtual Meetings: For virtual meetings, CIDR-P uses secure video conferencing platforms compliant with relevant privacy laws. Group meetings may use Zoom, Google, or Microsoft video conferencing platforms. Participants are responsible for securing their own internet connections.

CIDR-P is committed to protecting your privacy. The website used for scheduled groups is not HIPAA secured. We do not sell, trade, or rent your personal information gathered from support groups to third parties. We may share de-identified data from support group participants for research purposes.

CONTACT INFORMATION

For any questions or concerns regarding this policy, or to be removed from the registry, please contact:

Support@CIDR-P.org

If you would like to be removed from the registry please put “REMOVE ME” in the subject line of the email and in the body of the email provide your first and last name, year of birth, and zip code. Removals may take up to one month.