CNNM2 Registry Application

PROJECT CNNM2

PROJECT CNNM2

CNNM2 Registry Application

1Consent

2Contact Information

3Genetic and Clinical Information

4Submission

Before You Start:
This form must be completed either by the legal parent or guardian of the CNNM2 patient, or by the patient themself if they are 18 years or older. If you are another family member or friend, please send the link for this application to the person with CNNM2-associated symptoms (or their guardian) to complete on their own.
Welcome and Introduction
Thank you for your interest in joining the Jain Foundation’s CNNM2 Registry!

The Jain Foundation is a non-profit organization that searches for treatments for diseases which result from mutations of the CNNM2 gene. In addition to funding applicable research and drug development, we maintain a globally inclusive contact registry of persons with genetically confirmed CNNM2-associated disease.

This application is divided into four sections. In order for us to see your application, all sections must be complete and submitted.
1. 1) Consenting to our collection and internal review of certain personal information.
2. 2) Providing your contact information.
3. 3) Answering a series of questions regarding your or your child's medical condition.
4. 4) Applying to join the CNNM2 Registry if the Jain Foundation determines, based on the information that you provide us, that you qualify for membership.
If you have any questions about this application form, or would like to discuss any of your rights set forth below, please contact us by email at CNNM2patients@jain-foundation.org
Consent to Collection and Internal Review of Personal Information
In order to invite you into the CNNM2 Registry, we require certain information about you or your child, including individually-identifiable healthcare information (“Information”), and your consent for us to review, handle and maintain such Information. We will maintain the confidentiality of your Information. Only employees and consultants under obligations of confidentiality will have access to your Information. Pending your entry in the CNNM2 Registry, we will use your Information only to (i) determine whether you or your child is eligible for placement into the CNNM2 Registry, (ii) provide you with information to assist you in connecting with advocacy organizations, additional services, researchers and clinicians who might be relevant to you, regardless of eligibility for placement in the CNNM2 Registry, and (iii) follow up with you in the future should new programs or information become available that might be relevant to you. We may work with consultants under obligations of confidentiality to assist us in gathering and analyzing your Information and communicating with you on our behalf.
Consent*
Please review the statements below and then click the box below the final statement to confirm your agreement with each:
1. 1) I am voluntarily providing the Information to the Foundation (either directly by me, or by a third party to whom I have provided a separate request and authorization).
2. 2) Subject to the conditions set forth in this application, I authorize the Jain Foundation or its authorized and qualified consultants to receive, review, maintain and otherwise handle all Information provided now or in the future to (a) determine whether or not I or my child qualify for inclusion in the Registry as a patient with a genetic confirmation of CNNM2-associated disease (b) provide me with information to assist me in connecting with advocacy organizations, additional services, researchers and clinicians who might be relevant to me, and (c) provide additional information that might be relevant to me.
3. 3) I authorize the Jain Foundation or its authorized and qualified consultants to contact me again in the future to discuss their review of my or my child's Information (including interpretation of genetic analysis, evaluation of CNNM2 protein expression and documentation of symptoms) and to ask me for additional Information.
4. 4) I understand I have the right to request a copy of any personal data the Jain Foundation has collected from me in a common digital format by contacting the Jain Foundation and that I have the right to edit or correct any such data.
5. 5) I understand that I have the right to be notified of any breach involving my or my child's personal data.
6. 6) I understand that I have the right to object to the processing or continued processing of my or my child's personal data.
7. 7) I understand that I have the right to revoke this consent at any time upon prior written notice to the Jain Foundation.
After reading the information above, I confirm my agreement with each of the foregoing statements
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Text Messaging Consent*
- Yes
- No
By selecting Yes you agree to receive occasional text messages from the Jain Foundation’s Dysferlin Registry with registry updates and notification. You may cancel at any time by replying STOP (or words to that effect) to any text message. Msg rates may apply.
Your Name*
First Last
Relationship to patient*
- Self
- Parent
- Guardian
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Today's Date
MM slash DD slash YYYY

Patient First Name*
First
Patient Last Name*
Last
Phone Number*
Address*
City State / Province / Region ZIP / Postal Code Country
Email*
Enter Email Confirm Email
Patient Birth Sex*
- Female
- Male
- Intersex/Other
Patient Birth Month*
Patient Birth Year*
Please enter a number from 1900 to 2050.
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Patient Date of Birth*
Month
Day
Year

Please fill in the birth year and month above; we do not need to know the precise birth date.
Alternative Contact
In the event we are unable to reach you, please provide a friend, family member or support person's contact information below.
Contact Name
First Last
Relation
Phone
Email
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Neurologist/Physician Information Section
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Neurologist or Physician Name
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Neurologist/Physician or Clinic Address
Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country
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Neurologist/Physician Phone
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Neurologist/Physician Fax

CNNM2 Registry Consent

This form will give your permission to the Jain Foundation to add you to the CNNM2 Registry, should you be eligible. Please read the terms below for details of this consent.
Request to Join the CNNM2 Registry and Consent to Privacy Policies and Terms of Use*
If the Foundation confirms that I or my child meet their criteria for CNNM2-associated disease, I authorize the Foundation to include the Information in the CNNM2 Registry.

I hereby represent and warrant to the Foundation that I have carefully read the linked document entitled “Information Statement for Application to Join CNNM2 Registry and Consent to the Collection, Maintenance and Limited Use of Information” (the “Information Statement”) and that I fully understand its contents. I hereby consent to the terms and conditions set forth in the Information Statement. Without limiting the foregoing, I understand, acknowledge and agree that the Jain Foundation may review, store, use, share, and return or destroy the Information, as well as any additional individually identifiable healthcare information I may elect to provide in the future to the Foundation through the CNNM2 Registry, in accordance with and subject to this consent, the Information Statement, and any applicable laws or regulations.

I have also been informed and I understand that I may revoke this consent at any time upon prior written notice to the Foundation, subject to the conditions of this consent and the Information Statement.
I have read the terms above and in the Information Statement and consent to all terms.
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**EDIT** Please Read!
If you submit a CNNM2 Registry application and do not hear back from us within 5 days please CHECK YOUR SPAM FOLDER. Our response will be sent from patients@jain-foundation.org.
Thank you for your time!
We deeply appreciate your time in filling out this form. Once you have submitted your application using the button below, expect to hear back from the Jain Foundation within five business days. Make sure to check your spam folder for emails.
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