Information Statement for
Application to Join CNNM2 Registry and
Consent to the Collection, Maintenance and Limited Use of Information

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For purposes of your consent to be added to the CNNM2 Registry, we refer collectively to the Information we are collecting from you and other applicants currently, and any personally identifiable information we may collect later from you and others through the CNNM2 Registry following your inclusion, as “Member Information.” Subject to the details, procedures and conditions described below, individual Member Information will only be accessible to the Jain Foundation’s employees and contractors who are bound by written obligations of confidentiality.

The Jain Foundation’s Rights To Disclose Your Information vs. Aggregated Member Information

Subject to compliance with U.S. and international laws, when and as applicable, we may share with certain third parties, who we refer to as our “Partners,” your Information combined with other Member Information, provided that it has all first been aggregated and de-identified, which we refer to in this consent form as “Aggregated Member Information.” Our Partners may include pharmaceutical companies, hospitals, universities, research institutions and similar entities involved in the research, development and commercialization of potential therapeutics and cures for rare diseases such as CNNM2-Related Disease.

For example, the Aggregated Member Information we share with a Partner might include how many patients reside in a particular country, how many patients have a certain structural mutation, the average age of onset of symptoms for the disease, etc. Another example might be a report to a hospital or pharmaceutical company listing the number of patients on a particular treatment, the number of patients experiencing a particular symptom, enzyme levels in patients by age group, etc.

We might also report individual adverse event and drug safety information to the FDA, CDC, and/or other regulatory bodies (U.S. and international) as well as directly to pharmaceutical and biotechnology companies. We would not provide any of your Information other than as part of Aggregated Member Information to such regulatory bodies unless required by law, although we reserve the right to contact you for follow-up at the request of agencies or Partners.

We will not, however, disclose to any third party any of your non-aggregated Information that could identify you without first obtaining your express prior written consent, including your personal name, date of birth, image or likeness, email address, diagnosis date, first symptom date and family history, treatment information and treatment evaluations, rate of progression and severity, laboratory results and biomarkers, such as protein levels, enzyme levels and MRI or other images, or genetic information, such as information on individual gene mutations or entire genetic scans.

Examples of when we might disclose your Information with your express written consent include, without limitation, the following:

• If you agree to participate in a media interview arranged by the Jain Foundation, we will share your contact information (i.e., name, email, telephone) with the reporter for the purpose of conducting an interview.
• If you request to receive a newsletter via email, we will share your contact Information with the applicable vendor for the purpose of fulfilling your request.
• If you consent to participate in a future survey that entails the disclosure of responses on a patient-level basis and we obtain your express written consent to such disclosure prior to your participation in the survey.
• If you explicitly request to have your Information shared with a Partner, we would do so as instructed and consented to.

The Jain Foundation’s Use of Your Information

There are instances where your Information may be used by the Jain Foundation internally, including, but not limited to, the following:

• To determine whether you would be an appropriate participant in one or more surveys, in which case your responses may be analyzed, combined with other member responses, and shared with our Partners in the form of Aggregated Member Information only, unless consented to otherwise in advance. In such a case we would contact you by private message or email, and your decision to participate or not would be voluntary and in your own sole discretion.
• To determine whether you qualify for inclusion in a clinical trial for an experimental therapy that we have identified, or whether a new approved therapy might benefit you. In this case too, we would contact you by private message or email, and your decision to participate or not would be voluntary and in your own sole discretion.
• To determine whether certain treatments work better for some patients than others, which would be shared only as Aggregated Member Information.
• In the case of an emergency or other circumstance that we determine requires the management team to directly contact you.
• If and as required by law or to comply with legal process.

Risks and Benefits

While our goal is to help patients improve health outcomes, there are no certain benefits to joining the CNNM2 Registry. However, keeping track of personal well-being, treatments, and symptoms has been shown to be helpful in improving overall health.

There are also no known risks to joining the CNNM2 Registry, but there is a possibility that users may feel uncomfortable sharing information online. And if there is a data breach, a member could be discriminated against or experience repercussions as a result. We take precautions to avoid any such breach, and, as noted above, would notify you following any breach.

Your Information may contribute to the development of inventions or commercial products from which others may derive economic benefit. By joining the CNNM2 Registry, you acknowledge and agree that you will have no rights to any inventions, products or other such discoveries and that you will receive no economic benefit from their development or commercialization.

Updates to Your Information

To make sure that the data in the CNNM2 Registry are correct and up-to-date, it is essential that you update it regularly as it changes. We ask you to inform us about any major changes that occur, such as change of address, your participation in a research study or clinical trial, identification of new genetic data or changes in symptoms. You may request a form including your current Information where you can tell us about any changes in your medical condition or contact information.

No obligation to participate in the CNNM2 Registry; Right to withdraw if you change your mind

Your inclusion in the CNNM2 Registry is completely voluntary. Should you wish to withdraw your data from the CNNM2 Registry, you will be free to do so at any time without having to provide any explanation. If you wish to withdraw, you need to contact us as set forth below. If you withdraw, all your Information (identifiable and non-identifiable) will be removed from the CNNM2 Registry except for your anonymous medical data, which will be kept in the CNNM2 Registry for an unlimited period of time, unless you ask us explicitly to withdraw such data as well. We will not, however, be able to recall anonymous data from those with whom it has been shared prior to you request to withdraw.

Governing Law and Members from outside the United States

We and our servers are located in the United States and are subject to the applicable US local and national laws. These laws may not have equivalent privacy protection as those in your country of residence.

GDPR Recourse For Individuals in the EEA

Our representative in the EU for GDPR purposes is: Foley Hoag AARPI. You can contact our representative at:

Foley Hoag AARPI
153 rue du Faubourg Saint-Honoré
75008 Paris, France

If you are a resident of the European Union and have a complaint about our use or processing of your Personal Data, you have a right to lodge a complaint with a national Data Protection Authority. Each European Union member nation has established its own Data Protection Authority; you can find out about the Data Protection Authority in your country.

Questions

If you have questions or comments about this consent form, or wish to update your information or withdraw from the CNNM2 Registry Site, please contact us by email at patients@jain-foundation.org, or otherwise as follows:

Jain Foundation Inc.
9706 Fourth Avenue NE,
Suite 101
Seattle, Washington 98115
USA

Email: CNNM2patients@jain-foundation.org