Effective June 1, 2014.
The following terns constitute an agreement between you and DSI/BINDS, the operator of www.DaedalusSoftware.com/BINDS and www.BIN3DS.com (the "Site"). This agreement governs your use of the Site, both as a casual visitor and a registered member as described below.
By accessing or using the Site, you agree to be bound by the terms of this Agreement. To the extent you register on the Site as a member, then in addition to the terms that are applicable to all users of this Site, the terms that apply only to members shall apply to you too.
To be come a member and access the area on this Site reserved for members (the "Member Area"), BINDS requires that you are either a (a) diagnosed patient or a parent or legal guardian acting for such a patient who is under 18 years of age or incapacitated, (b) caregiver for a patient, (c) healthcare professional (e.g. doctor, nurse, health researcher, etc), (d) a medical researcher, (e) an OR nurse or surgeon, (f) a materials manager, (g) an individual who care about your health.
Children under the age of 14 are prohibited from registering as members. By registering as a member you represent that you are age 14 or older.
All of the material provided on the Site, such as text, or images and any other material provided on the Site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this Site.
If you think you may have a medical emergency, call your doctor or 911 immediately. BINDS does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the Site. Reliance on any information provided by BINDS, by persons appearing on the Site at the invitation of BINDS, or by other members is solely at your own risk.
Members shall not post or upload any information or other content on the Site that (a) is false, inaccurate or misleading; (b) is obscene or indecent; (c) infringes any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party; or (d) is defamatory, libelous, threatening, abusive, hateful, or contains pornography. Members shall not interfere with other members’ use and enjoyment of the Site (for example, by harassing, threatening, soliciting, overly promoting personal interests, or stalking another participant of a chat room, forum, seminar, or threaded message, including the use of expressions of bigotry, racism, hatred, or profanity). Members may not use the Site to conduct any activity that is illegal or violates the rights of others, provide instructional information about illegal activities, or promote physical harm or injury against any group or individual.
All members represent and warrant that the information they provided when registering as a member, and all information that they subsequently provide regarding themselves and their membership, is true and accurate and not misleading.
All Nonprofit Members may post event information and highlight services available to other members on their Nonprofit Member profiles. Each Nonprofit Member will be provided with a unique hyperlink to a member registration webpage on the Site (the “Nonprofit Registration Link”) that the Nonprofit Member can distribute to individuals with his/her communities who are eligible for membership (as described above under “Membership Eligibility”).
While Nonprofit Members may promote their own events, initiatives, and services to other members through the means described above, they may not directly solicit donations or volunteer services. For example, Nonprofit Members may, through posting on their profile and through private messages to members subscribed to their profile, promote and notify members of a fundraising event or volunteer initiative, including information regarding ticket prices to attend such an event or the scope of a volunteer initiative. However, it is not permitted to expressly ask members through use of the Site to purchase tickets to such an event or to donate money, property, or services to the Nonprofit Member or any other party.
In addition, Nonprofit Members may not create new forum posts to advertise or promote their services, events, or initiatives. Nonprofit Members can use private messages to contact members who are subscribed to their profiles; however, they may not private message members who have not subscribed to their profiles.
For purposes of clarity, references to “members” in these Terms and Conditions of Use include Nonprofit Members and, except as expressly stated herein, the same restrictions and obligations under these Terms and Conditions of Use that apply to members also apply to Nonprofit Members.
If you registered as a member and agreed to these Terms and Conditions of Use through use of a Nonprofit Registration Link, then the applicable Nonprofit Member (the “Referring Nonprofit”) will be recognized by BINDS as having referred you to the Site. You will automatically be subscribed to the Referring Nonprofit’s member profile and user postings (until such time as you affirmatively elect to unsubscribe). Likewise, the Referring Nonprofit will automatically be subscribed to your profile and user postings. The Referring Nonprofit will be able to send private messages to you as long as you remain subscribed to the Referring Nonprofit’s member profile and postings.
You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes. You may not post content on the Site that contains any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information. You shall not attempt to make the Site unavailable through denial-of-service attacks or similar means. You shall not use contact information provided by members, or collect information about our members, to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM or allow others use of your membership account to take such actions.
The Site content, including the Member Area and the content and information contained in the Member Area, is for the personal use of individual members only and may not be used in connection with any commercial endeavors, except such services provided by BINDS directly. Organizations, companies, and/or businesses may not become members and should not use the Site without express consent from BINDS. Members of BINDS with individual commercial interests may not solicit or overtly promote their products or services within the Member Area, unless such commercial offerings are in agreement to the Provider terms of this Agreement. All content shared within the site is not for external use. To garner permission and access to members, please direct all media and analyst inquiries to MediaRelations@DaedalusSoftware.com and all research requests to Research@DaedalusSoftware.com. Representatives from insurance companies are prohibited from creating profiles in our communities. Please direct inquiries to Support@DaedalusSoftware.com.
The Member Area includes community areas, such as forums and member areas, where members may post messages, images, and other content (“User Submissions”). If you are a member, you (or the author) owns the copyright in the messages, images, and other content you post in the Member Area, but by posting such content within User Submissions to the Member Area you grant BINDS and our affiliates the right to use, copy, display, perform, distribute, translate, edit, and create derivative works of your User Submissions, subject to the terms of the Privacy Policy.
While some community areas in the Member Area are monitored periodically for topicality, BINDS has no obligation to prescreen postings and is not responsible for their content. We encourage you to notify us of inappropriate or illegal content and we reserve the right to remove postings for any reason.
You agree not to disclose to any person or entity personally identifiable information about other members that you encounter while using this Site (whether posted in the Member Area by a member or emailed to you by a member) without the express consent of such member. You may disclose information of a general nature (that could not identify the member who provided such information or whom such information is about) to third parties outside this Site, subject to the above restriction on non-commercial use.
If you are a copyright owner or an agent thereof and believe that any User Submission or other content at this Site infringes upon your copyright, you may submit a written notification pursuant to the Digital Millennium Copyright Act (“DMCA”) (see 17 U.S.C. 512(c)(3) for further information) by providing our Copyright Agent (listed below) with the following information: (i) an electronic or physical signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (ii) a description of the copyrighted work claimed to have been infringed or if multiple copyrighted works are covered by a notification, a representative list of such works at our Site; (iii) a description of the location on the Site of the allegedly infringing material(s); (iv) your address, telephone number, and email address; (v) a written statement that you have a good faith belief that use of the material(s) in the manner complained of is not authorized by the copyright owner, its agent, or the law; and (vi) a written statement that the information in the notification is accurate, and under penalty of perjury, that you are authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.
If a User Submission that you submitted has been removed as a result of a notification as described above and you believe that such a User Submission or portion of a User Submission was posted lawfully, please contact us about our counter-notification procedure through which you can dispute the allegation and request re-posting of the User Submission content at issue.
BINDS designated Copyright Agent for notice of claims of infringement is:
Daedalus Software, Inc.
General Counsel
POBox 425857
Cambridge, MA 02142
Phone: 617-674-8173
Email: Legal@DaedalusSoftware.com
Only notices of alleged copyright infringement and requests about the counter-notification procedures should go to the Copyright Agent; any other feedback, comments, requests for technical support, and other communications should be directed to BINDS at Support@DaedalusSoftware.com. You acknowledge that if you fail to comply with all of the notice requirements of the DMCA, your notice may not be valid.
You are responsible for maintaining the confidentiality of your member password and login, and are fully responsible for all activities that occur under your password or account with or without your knowledge. If you knowingly provide your login and password information to another person, your membership privileges may be suspended temporarily or terminated. You agree to immediately notify BINDS of any unauthorized use of your membership password or login or any other breach of security.
BINDS may contain links to other websites that are not under the control of BINDS. The inclusion of any link does not imply endorsement by BINDS of such site and BINDS is not responsible for the content of such linked sites.
You agree that BINDS may, with or without cause, immediately terminate your BINDS membership or limit or terminate your access to the Member Area or the Site without prior notice. Without limiting the foregoing, the following may lead to a termination by BINDS of a member's membership and use of the Site: (a) breaches or violations of this Agreement or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated membership cancellation), (d) unexpected technical issues or problems, and (e) extended periods of inactivity. BINDS has no obligation to maintain, store, or transfer to you information or data that you have posted on or uploaded to the Site.
We reserve the right to modify this Agreement at any time, and without prior notice, by posting amended terms on this Site. We encourage you to review this Agreement periodically for any updates or changes, which will have an update effective date.
Membership with BINDS is currently free. BINDS Inc. reserves the right to from time to time change the terms of this Agreement and charge for membership and/or to provide additional optional services for a fee.
The Site and the content and services made available on the Site are provided on an "as is" and "as available" basis. BINDS does not make and disclaims all express and implied warranties and representations, including, but not limited to, any implied warranty of fitness for a particular purpose, with regard to the Site, the Site content, or any advice or services provided through the Site to the extent permitted by law. BINDS does not warrant that access to the Site or its content or services will be uninterrupted or error-free or that defects in the Site will be corrected.
The advice, recommendations, information, and conclusions posted or emailed by other members of the Site are not in any way vetted, approved or endorsed by BINDS, and you use such information at your own risk.
Under no circumstances shall BINDS, its partners, contributors, agents, employees, directors, or affiliates be liable for any indirect, incidental, special, or consequential damages (even if it has been advised of the possibility of such damages) due to your use of this Site or due to your reliance on any of the content contained or the services provided on the Site.
You agree to indemnify and hold harmless BINDS, its officers, employees, agents, subsidiaries, affiliates and other partners, from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your violation of this Agreement.
BINDS makes no claims that information on the Site is appropriate or may be downloaded outside of the United States. Personal information (“Information”) that is submitted to this Site will be collected, processed, stored, disclosed and disposed of in accordance with applicable U.S. law and our Privacy Policy. If you are a non-U.S. user, you acknowledge and agree that BINDS may collect and use your Information and disclose it to other entities outside your resident jurisdiction. In addition, such Information may be stored on servers located outside your resident jurisdiction. U.S. law may not provide the degree of protection for Information that is available in other countries. By providing us with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction as detailed in our Privacy Policy. If you do not consent to such transfer, you may not use this Site.
If you register as a member, you agree that BINDS may send notices to you by email at the email address you provide when registering to become a member (or which you later update using the functionality of the Site).
This agreement shall be governed by the laws of the Commonwealth of Massachusetts and the applicable federal laws of the United States of America. All disputes arising under, or in any way connected with membership in or use of the Site, shall be litigated exclusively in the state and federal courts residing in the Commonwealth of Massachusetts, and in no other court or jurisdiction. You hereby submit to the jurisdiction of the state and federal courts sitting in the Commonwealth of Massachusetts.
BINDS™ and the BINDS logo are trademarks of BINDS. You agree not to display or use these trademarks in any manner without BINDS's prior, written permission.
BINDS may assign this agreement at any time to a subsidiary or parent company or to a successor to its business as part of a merger or sale of substantially all of its assets. You may not assign or transfer this agreement.
If any provision of this Agreement is held to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.
For any questions or comments, or to report violations of this agreement, let us know, or contact us at:
DSI/ BINDS, Inc.
Attn: User Agreement Issues
POBox 425857
Cambridge, MA 02142
You agree that you have read, understood and accept BINDS Privacy Policy. This policy explains BINDS's collection of personal and non-personal information from you when using the Site and its use of and sharing of such personal and non-personal information.
BINDS ("Site") is a sharing web site. Our goal is to provide a platform for researchers who want to share their Biobanking samples and data needs to create collective knowledge about most relevant sample types and information (disease, health, and treatments) for various types of research. We know our success in achieving this goal depends on a shared belief in our Openness Philosophy. Being open about one’s data interest is not for everyone, and we strive, with full transparency, to outline the benefits and risks of being part of this sharing site, including those related to privacy.
This Privacy Policy outlines the type of information BINDS collects from individuals who have registered to join BINDS ("Members") and how it is shared with other third parties, including, but not limited to, pharmaceutical companies, medical device companies, non-profits, and research institutions ("Partners").
We reserve the right to modify this policy at any time, and without prior notice, by posting an amended Privacy Policy and terms on this website. We encourage Members to review this policy periodically for any updates.
What kind of information we collect
Some of the information that Members provide about themselves may be shared with the BINDS community, Partners, and others ("Shared Data"). Examples of Shared Data that Members may submit at the Site, including through their health profile ("My profile"), may include:
In the course of using the Site, Members may share information that could be used to reasonably identify them (" Information"), including name, photograph, and email address. When a Member chooses to share Personal Information via a free text field (e.g. forum, treatment evaluations, annotations, journals, feeds and adverse event reports) and photos or images, the information shall be treated as Shared Data.
Some of the information that Members enter into certain fields when registering to use or using the Site will not be shared (" Restricted Data"). The type of Restricted Data that Members may submit at the Site may include:
When a Member enters Personal Information, including name and email address, as part of registering to use BINDS, that Personal Information is treated as Restricted Data.
A cookie is a small 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 Site:
Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Data, may be shared with the community, other patients, and Partners. Members are encouraged to share health information but should consider that the more information that is entered, the more likely it is that a Member could be located or identified.
There are instances where both Shared Data and Restricted Data, including Personal Information, may be used and disclosed including, but not limited to, the following:
Shared Data is viewable via My Profile and through aggregated reports that are made available to other BINDS Members. In some instances, this Shared Data is also viewable to those not registered to join BINDS ("Non-members"). We report publicly Shared Data in aggregate, such as the number of patients on a particular treatment or the number of patients experiencing a particular symptom (see public Treatment and Symptom Reports). If a Member chooses to designate My Profile as "Public" (see Privacy Settings below), their Shared Data can also be viewed by Non-members and linked with aggregated reports.
In addition to serving the individual needs of our Members, BINDS and its Partners are interested in better understanding the patient experience and improving treatment options and health outcomes for everyone. For example, we may look at questions such as, "Do certain treatments work better for some types of people versus others?" BINDS provides Shared Data, in individual and aggregate format, to Partners and other third parties for use in scientific research and market research. When selling this information, BINDS removes Members’ Restricted Data to reduce the likelihood of re-identification prior to sharing information with Partners.
BINDS also provides a voluntary opt-in service to allow Partners to directly communicate with Members through our system.
BINDS may also periodically ask Members to complete short surveys about their experiences (including questions about products and services). Survey responses are analyzed, combined with Members’ Shared Data and shared with and/or sold to Partners. Member participation in these surveys is not required, and refusal to do so will not impact a Member’s experience on the Site.
BINDS may 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. BINDS does not provide Restricted Data to such regulatory bodies, although we reserve the right to contact Members for follow-up at the request of agencies or Partners. The information BINDS reports includes, but is not limited to, all of the information about the Member and/or free text or images on the forums or evaluations, which may include Shared Data. In addition, certain areas within our Site are provided with the support of Partners. These Partners may have adverse event reporting requirements that relate to regulated products that are used by Members of our community, and BINDS assists such Partners with reporting adverse events to regulatory agencies.
BINDS, like most Internet communities, is a public forum, and Members acknowledge and accept that any information shared through free text or images might be connected to Members’ Shared Data (which may be shared with, sold to, or displayed for others). For example, if a Member puts his or her name (or other Personal Information) into a free text field like the biography, forum, journals or annotations, the Member should know this information may be included in what is shared with, displayed for, or sold to Partners.
Restricted Data is not automatically shared with, sold to, or displayed for other Members or Partners. Specific instances where Restricted Data may be used include, but are not limited to, the following:
There are two privacy levels a Member may choose for participation at BINDS:
Members may change their privacy level at any time. Public profiles may be indexed or stored by Internet search engines (e.g. Google) or other independent sites, which means a Member’s Shared Data, including any Personal Information shared, may come up in the search results by anyone on the Internet, even after switching privacy levels.
Because the value of BINDS is in sharing one’s experiences to help others, we hope that Members feel comfortable enough to make their profiles as public as possible.
BINDS cannot guarantee the identity of any other Members with whom a Member may interact in the course of using the Site or who may have access to a Member’s Shared Data. Additionally, we cannot guarantee the authenticity of any data that Members may provide about themselves.
Finally, Members should know that BINDS takes commercially reasonable technical precautions to help keep Member data secure.
While our goal is to help patients improve health outcomes, there are no certain benefits to using this website. 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 using this website, but there is a possibility that users may feel uncomfortable sharing information online. It is possible that a Member could be identified using information shared on BINDS (and/or in conjunction with other data sources). A Member could be discriminated against or experience repercussions as a result of the information shared. For example, it is possible that employers, insurance companies, or others may discriminate based on health information.
Members should understand that anyone can register at BINDS and view the Shared Data in the system. If you are reading this Privacy Policy because you have access to the Personal Information of a Site participant, we urge you to recognize and fulfill your responsibility to protect the privacy of that person.
In using the Site, Members are free to skip any non-required questions or data fields that make them feel uncomfortable. Members are also free to stop using this service at any time. If a Member chooses to deactivate his/her account, BINDS will not display or sell the data in that account as of the date of deactivation. However, the Member’s data will remain in the system for auditing purposes, and research conducted prior to the deactivation of a Member’s account will still include the Member’s data.
BINDS complies with the U.S.-EU Safe Harbor Framework and the U.S.-Swiss Safe Harbor Framework as set forth by the U.S. Department of Commerce regarding the collection, use, and retention of personal information from European Union member countries and Switzerland. BINDS has certified that it adheres to the Safe Harbor Privacy Principles of notice, choice, onward transfer, security, data integrity, access, and enforcement. To learn more about the Safe Harbor program, and to view BINDS’s certification, please visit http://www.export.gov/safeharbor/
If you have questions or comments about our Privacy Policy, please let us know, or contact us at:
BINDS Inc.
Attn: Privacy Issues
P.O. Box 425857
Cambridge, MA 02142
Most healthcare websites have a Privacy Policy. Naturally, we do too. But at BINDS, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept.
You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At BINDS, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.
Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.
BINDS enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.
Will you add to our collective knowledge... and help change the course of healthcare?