Effective date: September 4, 2026

Clinical Picture Maker is operated by GeneticaLens. The platform includes the DAYTool, the See System Rare Disease Video Database, and associated review and analysis tools.

Clinical Picture Maker is built around video of real people living with rare diseases. These videos may contain sensitive health information, and the people shown in them may be recognizable. This Privacy Policy explains what information we collect, how we use and share it, and the choices available to you.

About This Policy

This policy applies to people who visit the Clinical Picture Maker website, create or use an account, participate through the DAYTool, review or access videos through the See System Database, subscribe to communications, or otherwise interact with us.

Some people use the DAYTool as participants in a research study. If you participate in a research study, you will also receive an informed consent form explaining the particular study, how your information and videos may be used, and your rights as a research participant. This Privacy Policy does not replace that consent process.

Information We Collect

The information we collect depends on how you use Clinical Picture Maker.

If you create an account, we may collect information such as your name, email address, account credentials, and other information needed to manage and secure your account.

DAYTool participants or their caregivers may provide information about the participant, including age or date of birth, diagnosis, symptoms, and other information about health and daily life.

When you submit a video through the DAYTool, we collect the video itself together with information associated with it, such as its title, description, recording date, the prompt it was submitted in response to, and symptoms or topics associated with the video. A video may also contain information that can identify the people who appear or can be heard in it.

Clinical experts who review videos may provide ratings, comments, suggested labels, and other information about the video and the symptoms or behaviors it shows.

We may also collect information you provide when you contact us, subscribe to updates, complete a survey, or otherwise communicate with us.

Like most websites, Clinical Picture Maker and the services we use to operate it may also receive technical information such as IP address, browser and device information, login and security records, and information generated through cookies or similar technologies.

How We Use Information

We use information collected through Clinical Picture Maker to operate the website and its accounts; receive, organize, edit, and display submitted videos; allow participants to view and share their videos; review and validate video content with appropriate experts; build and maintain the See System Rare Disease Video Database; conduct approved research and educational activities; communicate with users; provide technical support; protect the security of the platform; and meet applicable research, legal, and regulatory requirements.

We only use participant videos for purposes allowed by the participant's consent or other applicable permission.

How DAYTool Videos Are Reviewed and Shared

Videos submitted through the DAYTool may first be reviewed by GeneticaLens staff. Staff may edit a video, add or revise descriptive information and labels, and assign it to qualified experts for review.

Selected videos may then be included in the See System Rare Disease Video Database for educational, clinical, or research use.

Before a participant video is made more broadly available, we make efforts to remove unnecessary identifying information, including references to last names, addresses or locations, phone numbers, and similar information. First names may remain in some videos or descriptions.

Removing this information does not make a video anonymous. A person's face, voice, surroundings, family members, or other details in a video may make that person recognizable. Participants should consider this when deciding what they wish to record and upload.

Depending on the permissions associated with a particular collection or study, See System users may include clinicians, researchers, specialists, medical or health-professions students, therapists, educators, and people and families affected by rare diseases.

Sharing Your Own Videos

DAYTool participants can access videos they have submitted and may choose to share selected videos with other people through their Share Page.

For example, a participant or caregiver may choose to share videos with a physician, therapist, teacher, family member, or another person involved in the participant's care. Share Pages use access controls designed to limit viewing to the intended recipients.

You are responsible for deciding whom you invite to view videos through your Share Page.

Service Providers

We use outside service providers to help us operate Clinical Picture Maker. These providers may process information as necessary to provide services such as website hosting, video hosting and streaming, email delivery, security, and technical infrastructure.

Clinical Picture Maker uses Vimeo to securely host and stream video. Participant videos are not published as public videos on Vimeo and do not appear in Vimeo search results, public profiles, or recommendation feeds. Vimeo is used as the underlying video-hosting service so that videos can be displayed through Clinical Picture Maker to users who have been given appropriate access. When you upload or watch Vimeo-hosted video through Clinical Picture Maker, information may also be processed by Vimeo in connection with providing its video services.

We do not give service providers permission to use participant information for purposes unrelated to providing services to Clinical Picture Maker, except as otherwise disclosed or required by law.

Research

Clinical Picture Maker may be used to collect and study video as part of research involving rare diseases. Research participants will receive information about the particular study through the informed consent process.

Participation in research is voluntary. Choosing not to participate, or choosing not to record a particular activity or answer a particular prompt, does not prevent you from receiving any benefits to which you are otherwise entitled.

Research records may also be available to organizations or authorities responsible for reviewing or overseeing the research when required by the applicable study or by law.

How Long We Keep Information

DAYTool videos may be stored for an indefinite period while the participant's permission for their use remains in effect.

Other personal information is kept for as long as reasonably necessary to operate Clinical Picture Maker, carry out the purposes described in this policy, meet research obligations, resolve disputes, maintain appropriate records, or comply with legal requirements.

A research consent form may contain additional information about how long information from a particular study must be retained.

Withdrawing a Video or Ending Participation

Research participants may withdraw from a study in accordance with the study's informed consent process. Participants may also request that videos they submitted be removed from the See System Database.

If a participant was enrolled by a parent, guardian, or other legally authorized representative, the participant may also have the right to make their own request when they become legally able to do so.

Withdrawal may not require the deletion of every record associated with prior research activity. The applicable research consent will explain any information that must continue to be retained and what happens to information that was already used or shared before withdrawal.

To request withdrawal or removal of a video, please contact us through our Contact Us page.

Security

Because Clinical Picture Maker contains sensitive information, we use administrative and technical safeguards intended to protect it from unauthorized access, disclosure, alteration, or loss. These include restricting access based on user roles, account authentication and security controls, and additional access controls for participant sharing features.

No website or online storage system can guarantee absolute security. If we become aware of a security incident involving your information, we will respond and provide any notifications required by law.

Your Choices and Privacy Rights

DAYTool participants decide which prompts they respond to and which videos they choose to upload. Participants can also decide whether to use their Share Page and whom they invite to view their videos.

You may contact us to ask about information associated with your account, correct inaccurate account information, or make a privacy request. Depending on where you live and the laws that apply, you may have additional rights concerning your personal information.

You may unsubscribe from optional newsletter or promotional communications at any time. We may still send messages that are necessary to administer an account, research participation, or the services you have requested.

We may need to verify your identity, or your authority to act for another participant, before completing a privacy request.

Changes to This Policy

We may update this Privacy Policy as Clinical Picture Maker changes. The current version will always be posted on this page with its effective date.

If we make a significant change to the way participant information is collected, used, or shared, we will provide additional notice when appropriate.

Contact Us

If you have questions about this policy, want to make a privacy request, or want to request withdrawal or removal of a video, please use our Contact Us page.