The Sarah Jane Brain Project Virtual Center of Excellence
What is The Sarah Jane Brain Virtual Center of Excellence?
The Sarah Jane Brain Virtual Center of Excellence is an online ecosystem created for families of those with brain injury and the professionals who work with them. The first step in creating this ecosystem is the launch of the Sarah Jane Brain Registry. The purpose of the SJB Registry is to gather information about everyone affected by PABI and then convert the anonymous statistical information into a format usable by researchers in order to determine what works and what doesn't as it relates to treating pediatric brain injuries.
A patient can be enrolled into the SJB Registry at any time following their injury, whether it is at the time of the injury or many years down the road.
Personalized content within the SJB Registry will also be provided to enrolled families in order to help them better understand their condition and how to get help.
Over time, the Sarah Jane Brain Virtual Center will continue to add research and service partners in order to make more opportunities available for families.
There will be repeated communication with SJB Registry participants, a relationship rather than a limited engagement. Participants will be sent questionnaires at regular intervals to find out how they are doing, and what their needs are. Communication will be personalized to particular groups within the registry to facilitate research efforts over time.
The SJB Registry will follow strict federal guidelines to maintain the patients' rights to confidentiality and engagement. The patient ultimately controls his or her own information.
The SJBF believes practice standards should constantly evolve from best practice to outcome-based methodologies. The SJBP will begin with the best practice belief, but after further interventions and their outcomes can be studied, the results of these interventions need to be measured and evaluated.
Data acquired from those in the SJB Registry community will be rigorously evaluated in near-real time to look for better methods of treatment and care. This open standard will facilitate an information exchange throughout the continuum of care, independent of an individual hospital or caregivers' office practice.
The second phase of the Virtual Center will be the establishment of a portal for families, physicians and other professionals to upload health records into an interoperable database to optimize the acquisition, storage, retrieval of this information in real time.
The third phase of the Virtual Center will expand the Open Source Initiative which began with the launch of the Sarah Jane Brain Project in October 2007, when for the first time in medical history all the medical records of an individual were posted online using open source principals. Sarah Jane Donohue was this first case. The Open Source Initiative will allow caregivers to opt their children into a first-ever open source database of neuroinformatics.
To dramatically change PABI for patients, providers and researchers, the full power of technology must be leveraged. Data management, communications, outcomes measures and education are among the technologies which will be enabled by the SJBP. Millions of children will benefit from this process, and hundreds of thousands of care providers will be empowered as well.
For more details on the Sarah Jane Brain Virtual Center of Excellence, read Chapter 9 of the National Pediatric Acquired Brain Injury Plan.
Who may register? Any individual who is 18 years or older may register; however, individuals under the age of 18 will be allowed to participate only with parental or legal guardian's consent.
How do I register? By answering the required questions (marked with an asterisk "*") you will be automatically registered and then offered an opportunity to continue participating in the survey. Your username will initially be your email address and you will be invited to create a unique password.
We may terminate your access to this site or any part o it at any time with or without notice, in our sole discretion. Without limiting the foregoing, the following may lead to a termination by SJBF of your access to this 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. SJBF has no obligation to maintain, store or transfer to you information or data that you have posted on or uploaded to the site.
Not Medical Advice
The content contained on this site is not intended to and does not constitute medical advice, and no doctor/patient relationship is formed. The accuracy, completeness, adequacy, or currency of the content is not warranted or guaranteed. The use of information on the site or materials linked from the site is at the user's own risk. The contents of the site, such as text, graphics, images and other materials are for informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should always seek the advice of physicians or other qualified health providers with any questions regarding a medical condition. Users should never disregard professional medical advice or delay in seeking it because of something on the site. The site does not endorse any specific tests, products, procedures, opinions, or other information that might be mentioned on the site. Use of the SJBP Virtual Center does not create a patient relationship with SJBF.
No false information
You shall not provide any false, inaccurate or misleading information in connection with the use of this site. Also, you agree to update or correct any information which you have provided if such information becomes outdated or misleading. You shall not post or upload any information or other content that is obscene or indecent, nor infringes any copyright, patent, trademark, trade secret or other proprietary rights of publicity or privacy of any party and that is defamatory, libelous, threatening, abusive, hateful or contains pornography. Users shall not interfere with other users' use and enjoyment of the SJBP Virtual Center (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). Users may not use the SJBP Virtual Center 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.
Use of SJBP Virtual Center
You may not use any robot, spider, scraper or other automated means to access the SJBP Virtual Center or content or services provided on the site for any purposes. You may not post content 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 SJBP Virtual Center unavailable through denial-of-service attacks or similar means. You shall not use contact information provided by users or collect information about our users to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM or allow others use of your account to take such actions.
You agree not to disclose to any person or entity personally identifiable information about other users that you learn using the SJBP Virtual Center (whether posted in a public area or emailed to you by a user) without the express consent of such user. You may disclose information of a general nature (that could not identify the user who provided such information or whom such information is about) to third parties outside the SJBP Virtual Center, subject to the restriction on non-commercial use.
SJBP UserID and Password Identity
You are responsible for maintaining the confidentiality of your UserID and password 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 information to another person, your membership privileges may be suspended temporarily or terminated. You agree to immediately notify SJBF of any unauthorized use of your login information or any breach of security.
Non-Commercial Use of SJBP Center
The content and information contained in the SJBP Virtual Center is for the personal use of individuals and may not be used in connection with any commercial endeavors. Users with individual commercial interests may not solicit or overly promote their products or services. All content shared within the site is not for external use. To garner permission and access to user, please direct all media, research and analyst inquires to firstname.lastname@example.org.
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These terms and conditions and your rights and obligations hereunder may not be assigned by you without the prior written permission of SJBF and shall inure to the benefit of SJBF's successors and assigns whether by merger, consolidation or otherwise. SJBF may assign this agreement or any of its rights or obligations under these terms and conditions.
Any cause of action you may have with respect to your use of the site must be commenced within one (1) year after the claim or cause of action arises. If for any reason a court of competent jurisdiction finds any provision of these terms and conditions to be unenforceable, that provision shall be enforced to the maximum extent permissible so as to affect the intent of these terms and conditions, and the remainder of these terms and conditions shall continue in full force and effect. A printed version of these terms and conditions shall be admissible in judicial or administrative proceedings.
Minors under the age of 18 may only be registered by their parent or legal guardian.
Choice of Law and Personal Jurisdiction; Jury Trial This site is created and controlled by us in the State of New York, U.S.A. The laws of the State of New York govern any disputes between you and us arising in connection with this agreement, without giving effect to any principles of conflicts of laws.
THE SOLE AND EXCLUSIVE JURISDICTION FOR ANY ACTION OR PROCEEDING ARISING OUT OF OR RELATED TO THIS AGREEMENT SHALL BE IN AN APPROPRIATE STATE OR FEDERAL COURT LOCATED IN NEW YORK COUNTY, STATE OF NEW YORK AND THE PARTIES UNCONDITIONALLY WAIVE ANY RIGHT EACH PARTY MAY HAVE TO ASSERT THE DOCTRINE OF FORUM NON CONVENIONS OR TO OBJECT TO VENUE AND UNCONDITIONALLY WAIVE THEIR RESPECTIVE RIGHTS TO A JURY TRIAL.
IS THERE A SIMILAR PROVISION UNDER NEW YORK STATE LAW: This agreement shall not be governed by the Uniform Computer Information Transactions Act (UCITA) as adopted in Maryland under Title 21 of the Commercial Law Article of the Maryland Annotated Code, as amended from time to time. This agreement shall be governed by the common law of Maryland relating to written agreements without giving effect to any conflict of laws principles, as well as other statutory provisions, other than UCITA, which may apply, and shall be interpreted and enforced as if UCITA had never been adopted in Maryland. All activity occurring in connection with the site (including, but not limited to, accessing pages, and downloading materials) is presumed to occur in the State of Maryland.
Limitations of Liability When you access this site, you agree that SJBF shall not be liable to you for any loss or injury caused in procuring, compiling, or delivering the information gained from the site. In no event will SJBF, its partners, contributors, agents, employees, directors or affiliates be liable to you or anyone else for any action taken by you on the basis of such information or for any incidental, indirect, consequential, special, or similar damages (even if it has been advised of the possibility of such damages). This includes any reliance on any content contained or the services provided on the site. In addition, SJBF is not responsible for any computer-related damages that may result from viewing this website; this includes damages resulting from corrupt programs, downloaded documents or other materials obtained from this website. If you suspect a corrupt file or program, please notify The Sarah Jane Brain Foundation immediately.
You agree to indemnify and hold harmless SJBF, 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.
Copyright and Trademark
Unless otherwise indicated, all information contained on SJBP Virtual Center, such as text, graphics, logos, button icons, images, audio and video clips, is copyrighted by and proprietary to The Sarah Jane Brain Foundation. The content displayed on any page of this website may be used, downloaded, reproduced, publicly displayed, or reprinted for personal or nonprofit educational research purposes only provided that the following attribution appears in all copies: "Reproduced with permission of the Sarah Jane Brain Foundation, New York, NY." Permission is required for all other uses. The text reproduced from this website must not be modified in any way. The name and mark, The Sarah Jane Brain Foundation and its attendant logos and taglines, are trademarks of The Sarah Jane Brain Foundation and may not be used or reproduced without its prior written consent.
The site may also contain graphic images and other non-text-based materials. All rights to these materials are reserved to SJBF and/or the copyright owners who license such materials to us. Prior written permission to use, download, reproduce, publicly display, or reprint any of these materials must be obtained from SJBF or other copyright owner.
Compliance with applicable laws
Users of this site shall abide by all applicable federal, state, and local laws, including those pertaining to libel, slander, defamation, trade libel, product disparagement, harassment, invasion of privacy, and copyright and trademark infringement.
The Sarah Jane Brain Foundation was started with the idea of using Open Source Principles of sharing knowledge and experiences to advance our understanding of the brain and the injured brain. While we don't expect nor encourage everyone to make all of their information available to everyone, we have created this portal for users to share as much information in one place and provide the user the opportunity to decide what information they would like for the public to see.
Information Collection & Use The Sarah Jane Brain Foundation is the sole owner of the information collected on www.TheBrainProject.org. The SJBF collects personally identifiable information from our users at several different points on our website.
Registration -- Most of the information on this website (www.TheBrainProject.org) is available without registration/ membership. However, to participate in the discussions, subscribe to the Sarah Jane Brain Project (SJBP) Newsletter, or contribute News Items, Events, or Articles, you must first complete the registration form and create an SJBP ID and Password. During registration you are required to give contact information (such as name and email address). We use this information to contact you about the services on our website in which you have expressed interest.
As part of the registration process, you may be asked to provide information that does not personally identify you. For example, you may be asked to provide information concerning your information preferences and the like. This information is generally optional but may be included in your account profile and tied to personal information. SJBF requests this information to understand you better and to also bring to your attention new services, programs, or offers that may be of interest to you.
Surveys -- From time-to-time we may provide you the opportunity to participate in surveys on our website. If you participate, we may request personally identifiable information from you. Participation in these surveys is completely voluntary and you therefore have a choice whether or not to disclose this information. The requested information typically includes demographic information such as state, zip code, or country which we may use to monitor site traffic and ensure that it serves the needs of our participants. These surveys may be for research purposes and/or on behalf of third parties with which SJBF works closely, including researchers, pharmaceutical and medical device companies and insurance companies. Whether you participate in a particular survey will not impact your experience with the SJBP Virtual Center. You will not be excluded from future surveys if you decline to participate in a specific study or project.
We may use a third party service provider to conduct these surveys; that company will be prohibited from using our users' personally identifiable information for any other purpose.
Tell a Friend -- If you choose to use our referral service to tell a friend about our website, we will ask you for your friend's name and email address. We will automatically send your friend an email inviting him or her to visit the site. SJBF stores this information for the sole purpose of sending this email and tracking the success of our referral program.
Your friend may contact us at email@example.com to request that we remove this information from our database.
The type of data users may submit to SJBF through the SJBP Virtual Center to share and may be included within their profiles may include:
Condition/disease information, including diagnosis date, first symptom information and family history
Treatment regimens, including treatment start dates, stop dates, dosages, and side effects
Symptoms experienced, including severity and duration
Primary and secondary outcome scores over time
Biographical information, including photo, bio, gender, age, location (city, state & country) and general notes
Genetic information, including information on individual genes and/or entire genetic scans
Each user has the option of making as little or as much of their information public as they choose within their Profile Page. Users may change their privacy settings at any time, however, public profiles may be indexed and cached by Internet search engines (i.e., Google, Yahoo, Bing). The minimum basic profile will consist of the following information:
Sex: either male or female
Age: not the specific date of birth
State/Country: not the specific town or city
Relationship to brain-injured: could be a family member or friend, a professional or an individual who has a brain injury
Cause of brain injury: for example, sports-related concussion, car crash, fall, child abuse/shaken baby syndrome, blast injury from war, brain tumor, stroke
Uses of Information In the course of using this website, you may choose to provide us with information to help us serve your needs. For example, you may send us electronic mail (through a mailer or a web form) to request information, you may sign up for a mailing list, or you may send us your address so we may send you materials. Any personally identifiable information you send us will be used only for the purpose indicated. Requests for information will be directed to the appropriate staff to respond to the request, and may be recorded to help us update our website to better respond to similar requests. We will not sell, exchange or otherwise distribute your personally identifiable information without your consent, except to the extent required by law. Each web page requesting information discloses the purpose of that information. If you do not wish to have the information used in that manner, you are not required to provide it. Please contact firstname.lastname@example.org with questions or concerns on the use of personally identifiable information.
General, aggregated, demographic, and non-personal information may be collected by SJBF. It will not be linked to any of your personal information, through cookies or other means, without your consent. This type of anonymous, aggregated profiling and session data may include information that you have provided to us through surveys, polls, etc., but will not be tied to any personal information, without your consent. It may also include aggregated anonymous information about site usage and the user base.
Communications from the Site
Newsletters -- If you wish to subscribe to our email newsletter, we will use your name and email address to send the newsletter to you. Out of respect for your privacy, we provide you a way to unsubscribe. To unsubscribe, please send an email to email@example.com asking to unsubscribe.
Customer Service -- Based upon the personally identifiable information you provide us, we will send you a welcoming email to verify your SJBP ID and password. We will also communicate with you in response to your inquiries, to provide the services you request, and to manage your account. We will communicate with you by email or telephone, in accordance with your wishes.
Profile -- We store information that we collect through cookies and log files. We do not tie your personally identifiable information to information in your member profile. We use the cookies so you do not have to sign into the The SJBP Virtual Center more than once per visit. We use log files to determine how long people stayed in the SJBP Virtual Center and which content was popular.
We share your profile in aggregate form only. For example, we may create a report that states that there are 4000 people registered for SJBP in New York State. Of those people, 1500 report that they are parents of children with a Pediatric Acquired Brain Injury and 50 report that they are Occupational Therapists.
Information Sharing and Disclosure
Personally Identifiable Information -- We DO NOT Share Personally Identifiable Information with Third Parties Without Your Consent.
Service Providers -- We use other third parties to provide web programming on our site. The programming service provider may use data on our website to fix or test the data storage mechanisms of this website. These third parties are prohibited from using your personally identifiable information for any other purpose.
Legal Disclaimer -- We reserve the right to disclose your personally identifiable information as required by law and when we believe that disclosure is necessary to protect our rights and/or to comply with a judicial proceeding, court order, or legal process served on our website. In addition we may report adverse event and drug safety information to the FDA, CDC and/or other regulatory bodies (both US and internationally) as well as directly to pharmaceutical and biotechnology companies.
SJBF cannot guarantee the identity of any other users with whom you may interact in the course of using the SJBP Virtual Center or who many have access (based on the privacy settings you have selected) to information you have posted. Additionally, we cannot guarantee the authenticity of any data that users may provide about themselves.
When you complete or update your SJBP registration form, you will have the opportunity to select (Opt-in) those activities in which you want to participate. We provide you the opportunity to 'opt-out' of having your personally identifiable information used for certain purposes, when we ask for this information. For example, if you do not wish to receive the SJBP Newsletter, you can indicate your preference on your registration form.
As is true of most websites, we gather certain information automatically and store it in log files. This information includes internet protocol (IP) addresses, browser type, internet service provider (ISP), referring/exit pages, operating system, date/time stamp, and clickstream data. We use this information, which does not identify individual users, to analyze trends, to administer the site, to track users' movements around the site, and to gather demographic information about our user base as a whole. We do not link this automatically-collected data to personally identifiable information.
We use session ID cookies. We use session cookies to make it easier for you to navigate our site and to establish your access privileges to various protected content on the site. Our session ID cookie remains on your hard drive for an extended period of time, but expires in 30 minutes from the time it was created.
You can remove persistent cookies by following directions provided in your Internet browser's "help" file. More information on how to manage cookies in Internet Explorer is available at: http://support.microsoft.com/kb/283185.
We set a persistent cookie to store the fact that you are logged into the system and what groups you are part of, so you don't have to login more than once. We do not store the username or password in the cookie - only the fact that you are authenticated and your groups. The groups that you are part of determine what permissions you have to access resources on the site.
If you reject cookies, you may still use our site, but your ability to use some areas of our site, such as discussions, will be limited.
Links to Other Sites
This website contains links to other sites that are not owned or controlled by the SJBF. Please be aware that the SJBF are not responsible for the privacy practices of such other sites.
We encourage you to be aware when you leave our site and to read the privacy statements of each and every website that collects personally identifiable information.
This privacy statement applies only to information collected by this website.
If you use a Discussion Forum on this website, you should be aware that any personally identifiable information you submit there can be read, collected, or used by other users of these forums, and could be used to send you unsolicited messages. We are not responsible for the personally identifiable information you choose to submit in these forums.
Access to Personally Identifiable Information If your personally identifiable information changes, or if you no longer desire our service, you may correct, update, or delete it by logging into the SJBP Virtual Center and make the change on your member profile page. If you have any questions, please contact us at firstname.lastname@example.org.
We follow generally accepted industry standards to protect the personal information submitted to us, both during transmission and once we receive it. No method of transmission over the Internet, or method of electronic storage, is 100% secure, however. Therefore, while we strive to use commercially acceptable means to protect your personal information, we cannot guarantee its absolute security.
If you have any questions about security on our website, you can email us at email@example.com.
We reserve the right to modify this privacy statement at any time, so please review it frequently. If we make material changes to this policy, we will notify you here or by means of a notice on our home page.