The website located at https://www.jain-foundation.org, which we refer to as the “Website,” is owned and operated by the Jain Foundation, Inc., which we refer to as “we,” “us,” “our,” or the “Jain Foundation.”
We request information directly from our visitors primarily under the following circumstances:
- Research Activities. If you are a researcher with an institution or company, we will collect information about you or your employer when you seek funding for a research project, access to research materials or data, or similar assistance.
- Conferences. If you are registering to attend a Jain Foundation conference, we will collect information about you and your employer as part of the registration process and as part of your submission of an abstract or poster presentation.
- ALDA. If you use our online diagnostic tool ALDA (see below), we will collect the questions, answers and analyses for our internal use. If you are a physician, we also collect information about your medical practice and ask that you use an anonymous code name for your patient. If you are a patient and wish to use ALDA directly, you must contact us for assistance, in which case we will learn your identify.
- Dysferlin Registry Membership Application. If you are seeking to join our patient registry, the Dysferlin Registry (see below), we will collect certain medical information from you, your physician, or both, to determine whether you qualify for membership.
Please read this policy in its entirety to understand how we protect such information and how we may use it and, in limited situations, share it.
You have the right to clear and transparent communication about how we collect and use such information, and we have strived to make this policy as clear as possible to help you understand it. We welcome any questions or feedback at firstname.lastname@example.org.
Use of ALDA
We have developed a free online tool to help guide physicians toward the most probable diagnosis of patients whom they believe have some form or muscular dystrophy, which we call ALDA, short for Automated LGMD Diagnostic Assistant. This tool, which you can find on the Website at https://www.jain-foundation.org/patients-clinicians/for-healthcare-professionals/automated-lgmd-diagnostic-assistant-alda/, or at https://jain-foundationalda.org/alda/, predicts the most likely type(s) of neuromuscular diseases, including LGMDs, if applicable, that a patient might have based on clinical presentation and laboratory findings. Please read all the Terms of Service as well as the FAQ for Service before using ALDA, which can be found at [https://www.jain-foundation.org/terms-and-conditions/] and at https://jain-foundation.org/alda/content/faq, respectively.
If you are a patient interested in personally investigating which type of neuromuscular disease your symptoms most closely match, including whether your symptoms indicate a form of LGMD, the Jain Foundation can facilitate an interview to gather more information, and can run the ALDA program for you. The Jain Foundation can be reached at 425-882-1492 or email@example.com. Alternatively, please contact your physician to use ALDA on your behalf.
ALDA does not collect personally identifiable information about the subject patient, so long as an anonymous code name is used. However, if you are a patient and you call us for assistance in using it, we will learn your identity as well as your responses to the questions generated by the tool. In that case, we will first obtain a written consent from you and will afford any such information the same protection as any other Personal Data as defined and discussed below. You hereby acknowledge and consent to the foregoing.
How We Collect Information
We may collect information via online forms, via emails we receive from you, and via online or telephonic conversations we have with you after you have contacted us through the Website. If you choose to call us, submit a form, or send an email to us, we may retain the contents of your message, our reply, and your applicable contact information as part of our ongoing efforts to assist you. We reserve the right to contact you after you have contacted us and may send future emails and/or surveys to you. You may notify us if you wish to discontinue electronic communication.
Information We Collect and Restrictions on Its Use and Sharing
In some cases, we collect Personal Data, which is information provided by Visitors that could identify them. This information might include, for example, your personal name, your date of birth, a photograph of you, your mailing address, your email address, your diagnosis date, your first symptom date and family history, your treatment information and treatment evaluations, your rate of progression and severity, your laboratory results and biomarkers (such as protein levels, enzyme levels and MRI or other images), or your genetic information, such as information on individual gene mutations or entire genetic scans.
We will not share any of your Personal Data with any third parties without your express prior written consent, unless it is de-identified, at which point it is no longer considered Personal Data. Personal Data will only be shared with employees and consultants of the Jain Foundation.
How we Might Use Your Data
There are instances where your data may be used and disclosed including, but not limited to, the following:
- If you are an individual seeking to join the Dysferlin Registry, we will review your data to determine whether you qualify for membership as a person with dysferlinopathy. Following our review, we will contact you to discuss our findings and suggest next steps.
- If you are a researcher or physician who has provided us your business contact information, we might use it to invite you to conferences or similar events, to request that you submit a research proposal, or to send you information that we believe you might find helpful. We might also use your business contact information to connect you with other researchers or clinicians who have expressed an interest in studying dysferlinopathy and, if you are a physician, we might refer patients to your office. With your permission, we might also post your business contact information in a section of our website.
- We use Personal Data and site usage internally, as needed, for research, for maintenance and operation of the Website, and to create the best possible tools and functionality for Visitors.
- We may use a Visitor’s data in the case of an emergency or other circumstance that we determine requires the management team to directly contact the Visitor.
- We may share or disclose a Visitor’s data where required by law or to comply with legal process.
Also, the Website maintains a mailing list. The mailing list includes certain individuals who have contacted us, including those with dysferlinopathy, families of affected individuals, friends, physicians, scientists, and others. The Website will never release the mailing list to any outside organization or third party unless authorized by the Visitor or required to do so by law. However, if an outside organization sends us information for distribution to Visitors, we may mail it to you.
Your Data Rights
All individuals have rights regarding their Personal Data, which, as discussed above, is data that is identified or connected to their identity. The European Union’s (EU) General Data Protection Regulations (GDPR) describes these rights in law, but we believe they should apply to all individuals. They include:
- You have the right to request a copy of your Personal Data in a common digital format. To request this information, please contact us as set forth at the end of these policies.
- You have the right to edit or correct any Personal Data. If you need help, please contact us.
- You have the right to request that your Personal Data be deleted. To do this, please contact us.
- You have the right to be notified of any breach involving your Personal Data. We will notify the appropriate data protection authority within 72 hours of detecting a breach involving your data. We will notify you as soon as possible after that.
- You have the right to object to the processing of your data. For clarity, we may still share with our research partners “De-Identified Data”, which is information regarding you that does not identify you and is not connected with you.
In some cases, these rights might be restricted. Some examples would include where the information requested compromises the privacy of another individual or is the subject of legal proceedings or investigation. Additionally, processing that has already occurred cannot be undone. Further, these rights to edit, delete, be notified of a breach, and object to processing all apply to Personal Data and do not apply to De-Identified Data that, for example, has been shared by us with our research partners and contractors.
If you have questions or complaints about our handling of these rights, please see the information at the end of this policy.
The Bases for Our Collection and Use of Personal Data
Any processing of your Personal Data will have a basis in law. The GDPR sets out a few possible bases, three of which apply to the Jain Foundation and our Registry.
- As discussed above, we need to use some identifying information to operate the Website, which includes your email address and IP address, among other items.
- We may use Personal Data to determine whether you are eligible for membership in the Dysferlin Registry or for research with your consent. As explained above, we will always ask for your explicit written consent before sharing Personal Data with our research partners or other third parties.
- In rare cases we might be required to share your identifying data to comply with a legal obligation to a third party.
Material presented on this Website is for informational purposes only, and the Jain Foundation makes no representations, warranties or assurances as to the accuracy, currency or completeness of the content provided, including third party information. Information obtained on this website does not substitute for consulting a physician or healthcare provider knowledgeable about LGMD2B/Miyoshi.
A cookie is a data file that often includes an anonymous, unique token, which is sent to your browser from a website’s computers and may be stored on your computer’s hard drive. Two types of cookies are required to use the Website:
- Session Cookies are temporary cookies that remain only until you log out of the website or exit your web browser. Session Cookies do not store any Personal Data, only a unique visitor ID number that may be used to ensure Visitors are properly authenticated and can view site information.
- Persistent Cookies remain in the cookie file of your browser for much longer, even after you leave the Site. Persistent Cookies also do not store any Personal Data. Persistent Cookies store preferences that should persist from visit to visit, like “Remember Me,” and a unique token to enable us to understand how Visitors use the site, which we refer to as Site Usage.
Log Files; Web Beacons
The Website may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (IP) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the site, track the movement of users, and gather broad statistical information for aggregate use. IP addresses are not linked to Personal Data. The Website may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to Personal Data. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.
Third Party Websites
Other Security Issues
We employ independent contractors, vendors and suppliers to provide specific services and products related to the Website or to the services provided on it, including performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the site and the services provided on it. These outside contractors may have limited access to information collected on the site, including protected health information and personally identifiable information. In the course of providing such products or services, such outside contractors will be contractually obligated to protect the privacy and security of all protected health information and personally identifiable information.
Visitors should know that we take commercially reasonable technical precautions to help keep Visitor data secure. Visitors should keep in mind, however, that no internet transmission is ever 100% secure or error-free.
Governing Law and Visitors from outside the United States
We and our servers are located in the United States and are subject to the applicable US local and federal laws. These laws may not have equivalent privacy protection as those in your country of residence. When we share information about you with our various research partners we use contractual data protection clauses which have been approved by the European Commission.
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.
Jain Foundation, Inc.
9706 Fourth Avenue NE, Suite 101
Seattle, WA 98115
Tel: (425) 882-1492
Effective: May 14, 2021