PRIVACY POLICY

CASK Gene Foundation is committed to protecting your privacy. This privacy policy will explain how our organization uses the personal data we collect from you, and outlines your data privacy rights. Please read it carefully. 

In this policy, The CASK Gene Foundation may be referred to as any of the following terms: “CGF,” “we,” “us,” “our,” “the foundation.” We use the terms “you” and “your” to refer to any individual about whom we collect personally identifiable information. This includes any data that could be used to identify or locate a living person, such as name, address, phone number, email, etc. 

About Us. We are CASK Gene Foundation, Inc, a registered non-profit in the state of Utah, and recognized by the U.S. Internal Revenue Service as a 501(c)(3) non-profit (FEIN: 84-3820188). 

The Data We Collect. We collect different types of data, for different purposes. Read below to learn about the data we collect. 

When you browse caskgene.org 

You can browse our website without revealing personal information that can be used to identify you. Caskgene.org does collect non-personal information such as your Internet Protocol (“IP”) address, the name of the domain you used to access the Internet, the web site you came from and the site you visit next (see “How We Use It,” below). However, CGF does not associate information with records containing any personally identifiable information submitted to us, so you remain anonymous when you browse the website.

Our website uses cookies and similar technologies, which are small files or pieces of text that download to a device when a visitor accesses a website or app. For information about viewing the cookies dropped on your device, visit: The cookies Squarespace uses.

Our website collects data to power our site analytics, including:

  • Information about your browser, network, and device

  • Web pages you visited prior to coming to this website

  • Your IP address

This information also includes details about your use of this website, including:

  • Clicks

  • Internal links

  • Pages visited

  • Scrolling

  • Searches

  • Timestamps

You are given the opportunity to decline cookies, and you can visit https://allaboutcookies.org to learn how to remove cookies from your browser. However, in a few cases, some of our website features may not function as a result.

When you join our contact registry

We collect your contact information, including your name, address, phone number, email address, preferred language, and a description of your role in connection with a CASK gene disorder. If joining the social network as a family member, friend or caregiver, we will collect other identifiers, including your name, username, or handle as it appears on social media. If joining our professional network, we collect your job title, place of work, and qualifications. 

This data is collected so that we are able to register you and provide services to include invitations to social or professional networks, providing information related to CASK gene disorders, providing practical information & contacts to you, care for your affected family member, and contact in case of a query. 

We process this data to understand where the CASK gene communities are, so that we can improve and fund our services accordingly. Your consent to be part of this contact registry is considered perpetual. This information is only collected and stored with your consent, gained when you first provide the data in our online submission form(s). Your choices relating to your consent for us to store and use your data are stored on our electronic database. You can unsubscribe from broader email subscriptions using the unsubscribe link provided in email. You can also choose to have your personal data deleted from the contact registry at any time by filling out the contact form linked below.  

When you add a case to the CASK Registry, access CASK Family tools, or participate in research hosted by CGF

If you choose to submit information about an existing CASK case diagnosed, we collect your personal information to connect your registered CASK gene case to your information in our contact registry, including your name and the email address that was used previously to join the contact registry.  We collect personal information about the person with a CASK gene diagnosis, including full name, birth gender, date and municipality of birth, and current location (city, state/province, country). We also collect private health information (PHI) including diagnosis, date of diagnosis, their current status of living or deceased, and if applicable - the date of death. You have additional opportunities to voluntarily consent to share additional health information details. In the initial registration, you can choose to provide specific details about the genetic analysis, either by uploading a copy of the genetic report, or by entering details from that report into the registration forms, including the cDNA coding, amino acid change, inheritance, and classification/interpretation. 

After joining the CASK Registry, you are also invited to use the family tools and access opportunities to participate in further research using our CASK Gene Matrix platform. You will be linked to our service provider’s platform for collecting and storing data. This service provider has access to all your account Information in order to perform the service(s) and functions outlined in their contracts and agreements with CGF. The service providers must sign a contract promising to use and share the information only for the job they are doing for us, to improve the service they provide to CGF and as required by law. Service providers are also required to promise to use safeguards to keep information safe. This service provider’s platform may have company-specific terms of use which will apply to your use of their platform in addition to our terms of use.

This information is only collected and stored with your consent, gained when you first provide the data in our online submission form(s), and indicate that you are legally authorized to share information about this person. 

We process this health data to publish basic aggregate statistics about the number and demographic characteristics of those with confirmed CASK gene disorders, and to collect data which may lead to novel insights about CASK-related disorders. This information is also used in our correlative studies as outlined in the informed consent for these studies. Only with your additional consent, you may participate in data sharing programs to aid qualified research scientists, after the data has gone through a thorough de-identification process to remove any information that may be used to identify or locate individuals. You may also request to share data between organizations with personal identifiers or pseudonymized unique IDs, for the purpose of linking data from multiple studies, by signing an additional informed consent for this service. 

In order to meet the variety of our purposes to provide support for individuals with a particular disability or medical condition that is known to be life-long, and to support related research efforts, the timeframe for processing this health information as a special category, is considered perpetual. 

All personally identifiable private health information is protected at our highest level of security, and in compliance with the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Although we are not able to remove de-identified data that has been shared with your informed consent for research, you may wish to correct or remove your data from the registry at any time by submitting using the contact form linked below. 

When you consent to share your photos or videos with CGF

Those families that have registered with the foundation are invited to share their digital media, including any photographs, video recordings, audio recordings, consenting for the foundation to use and reuse this media, in print and online, for the purposes of teaching, training, fundraising, raising awareness, or other public educational purposes, or other purposes of the foundation. 

In addition to the media listed above, we collect personal information, including your name and the name of the person with a CASK gene disorder, and your email address. This information is collected to verify against the CASK Registry, to ensure we are accurately representing those who have a CASK diagnosis.  

You will be asked to fill out a media release form, and add your digital signature (or you may choose to print and sign physically). Since anyone can download an image from the internet or make copies from printed materials, The CASK Gene Foundation is not held responsible for unauthorized use of the images after they are published.  

Media is only used with your consent, as indicated by your submission and approval of media files, in combination with your signed media release form. This consent is considered perpetual, but you can revoke this consent in writing at any time, by using the contact form linked below. Upon request, we will make reasonable effort to remove images from existing digital media, but this revocation of consent is not considered retroactive, for instances where it would be unduly difficult to retrieve and reprint physical publications. 

When you apply to volunteer for CGF

When you fill out our online form, expressing interest in volunteering for the foundation, we collect and store your contact information, like your name, email address, and location (city, state/province, country). We also collect and store any other information you provide voluntarily to clarify your interest including a description about yourself, your LinkedIn or other professional profile, the types of volunteer jobs you are interested in, and a copy of or link to your professional resume or CV. This information is used to match volunteers to specific roles or projects. 

If you accept a volunteer assignment, your data is stored for the duration of your appointment as a volunteer, and for 3 years following the cessation of this volunteer appointment, or following necessary data retention timelines to assist with aid or grant applications or comply with legal or tax purposes.  If there is no assignment appointed, then the record of interest will be deleted after 3 years from the date of the submission of that data, or sooner if you request the removal of this information using the contact form linked below. 

When you submit a donation or purchase merchandise

When you make a donation on the caskgene.org website, through a CGF fundraising campaign form, or during a CGF sponsored fundraising event, we collect information that is required in order to process the transaction. This includes your name, email address, billing address, and information about your preferred payment method. You also have additional options, including: indicating a person in whose honor you want to make the donation, and sending an ecard to a designated recipient; indicating a program area for which you would like to designate your donation; or disclosing your employer so they can be prompted to match a donation. 

We are required to collect and store information about our income sources, in order to comply with legal and regulatory requirements regarding financial data retention timeframes, and to correctly prepare our financial statements and submit our tax forms. 

When you request or research related data, information, or assistance

When you fill out our online forms, to request research data, submit an open study for recruitment, or submit a proposal for a research grant, we collect and store your contact information, as described above in the section “When you join our contact registry.” We will also collect information about your research study, including the following: 

  • Who is conducting the study (lead and collaborator personnel) 

  • Project title

  • A description of the study

  • The format(s) for the study (survey, interview, medical record review, clinical visit, etc) 

  • Participant eligibility requirements

  • Benefits and risks

  • Time, travel, and compensation details for participants 

  • How the data will be stored, used, shared, and/or destroyed

  • How participants can enroll

  • Status of IRB review

  • Information about the funding source for the study

This information is used to conduct an internal review, by CASK Gene Foundation’s advisors, in the areas of medicine, science, technologies, and ethics. It is also used to populate the forms and agreements required for our mandatory disclosures, in the case of the transfer and use of de-identified data about human subjects. In the case of studies seeking enrollment, this information is used to help recruit participants. This information is retained to the extent necessary to comply with the records retention requirements under any law, and for the purposes of research integrity and verification. 

Children and Vulnerable Adults. Our online forms and sites are not intended for the use of unsupervised children under the age of 13. To that end, CASK Gene Foundation does not collect personally identifiable information directly from any person known to be under the age of 13. We do collect information about children and vulnerable adults, and make every effort to ensure that we are only receiving this information from a responsible adult person who is legally authorized to share this information on behalf of the identified individual(s).  

Data Storage and Security. When your data is collected or processed by our third party vendors, it is stored in accordance with their respective privacy policies. When information is submitted directly to the foundation, or processed by the foundation, it is stored on our professionally sourced cloud servers provided by Google Cloud and Amazon Web Services, and protected using multiple safeguards.  

Administrative Safeguards 

Data access is governed by top-level governance, which 1) determines how programmatic security processes are selected and used, 2) designates personnel who oversee data access by others, 3) sets user controls to help monitor and restrict data access, 4) implements workforce training, and ensuring data privacy, and 5) promotes security awareness throughout the organization. 

Physical Safeguards

Data storage security is also prioritized by 1) contracting with reputable vendors for professional grade cloud-based services and storage, and 2) limiting access to workstations or devices that store or are connected to sensitive data

Technical Safeguards 

Data is also protected by a variety of more advanced technological methods to prevent unauthorized access, including: 1) implementing user accounts for staff and volunteers, required password settings, and individual level access controls for cloud based systems, 2) protocols for regularly auditing systems and accounts, 3) monitoring for data integrity, to verify no data is altered or deleted inappropriately, 4) regular monitoring of network traffic to ensure transmission security for any workstations or devices that store sensitive data. 

Security Disclosures

We will inform you within 60 days if there is a serious information breach. 

Applicable Law / International Issues

Currently, CGF websites and services are intended for people in the United States, using languages that are found among our US registrants. If you are in another country and use this website or sign up for CGF accounts, your information will be transmitted and stored on servers in the United States. With your permission, your information may also be shared with researchers based in the United States or other countries where you do not live. The United States or other countries to which your information may be transmitted may have different laws about protecting information than the country where you live. By providing us with your personal information, you acknowledge that you have read this privacy policy, understand it, agree to its terms and consent to the transfer of such information outside your resident jurisdiction.

Your Data Protection Rights. We aim to offer the following data protection rights to our donors and registrants, who also have the right to receive a paper copy of our privacy policy upon request.  

  • The right to access - You have the right to request copies of your personal data. We may charge you a small fee for this service.

  • The right to rectification - You have the right to request that we correct any information you believe is inaccurate. You also have the right to request us to complete the information you believe is incomplete.

  • The right to erasure - You have the right to request that we erase your personal data, under certain conditions.

  • The right to restrict processing -You have the right to request that we restrict the processing of your personal data, under certain conditions.

  • The right to object to processing - You have the right to object to our processing of your personal data, under certain conditions.

  • The right to data portability - You have the right to request that we transfer the data that we have collected to another organization, or directly to you, under certain conditions.

  • The right to disclosure - You have the right to receive an accounting of disclosures of protected health information. 

Privacy Policies of Other Websites. Our website contains links to other websites. Our privacy policy applies only to our website, so if you click on a link to another website, you should read their privacy policy.

Changes to our Privacy Policy. We keep our privacy policy under regular review and place any updates on this web page. All information submitted through this website is subject to the terms and conditions of this privacy policy, as it may be amended from time to time. If you have signed a consent for research, changes to the Privacy Policy will not affect the consent you signed.

How to Contact Us.  If you have any questions about The CASK Gene Foundation’s privacy policy, the data we hold on you, or you would like to exercise one of your data protection rights, please do not hesitate to contact us.

www.caskgene.org/contact

How to Contact the Appropriate Authority. If you feel that we have not addressed your concern in a satisfactory manner, you have recourse if you feel that your privacy protections have been violated. You have the right to file a written complaint with our office or with the Department of Health and Human Services, Office of Civil Rights, about violations of the provisions of this notice. We will not retaliate against you for filing a complaint. For more information about HIPAA or to file a complaint, contact The US Dept of Health and Human Services Office of Civil Rights at 200 Independence Ave. SW, Washington, DC 20201.  Phone: 202-619-0257 or 1-800-696-6775