FIND THE FH PATIENTS IN YOUR PRACTICE

The Family Heart Foundation has created a machine-learning FIND FH algorithm that analyzes medical and insurance records to identify probable FH patients with profiles consistent with FH. Over 350 variables, including diagnosis codes, procedure codes, prescription codes, lab values, gender and age, were evaluated on over 221 million Americans (children and adults) with or at risk for cardiovascular disease. Through a partnership with a national claims vendor, the Family Heart Foundation can identify patients with probable FH in a HIPAA compliant manner, ensuring that clinicians are alerted to probable FH patients in their practice while patient identities remain de-identified to the foundation.

Find the FH patients in your practice

The Family Heart Foundation has created a machine-learning FIND FH® algorithm that analyzes medical and insurance records to identify probable FH patients with profiles consistent with FH. Over 350 variables, including diagnosis codes, procedure codes, prescription codes, lab values, gender and age, were evaluated on over 221 million Americans (children and adults) with or at risk for cardiovascular disease. Through a partnership with a national claims vendor, the Family Heart Foundation can identify patients with probable FH in a HIPAA compliant manner, ensuring that clinicians are alerted to probable FH patients in their practice while patient identities remain de-identified to the foundation.

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Why FIND FH?

Familial hypercholesterolemia or FH is a common life-threatening genetic disorder that leads to early and aggressive heart disease. Recent studies suggest 1 in 250 people have FH, yet over 70% have not been diagnosed.

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How FIND FH works?

FIND FH® utilizes machine learning technology to analyze insurance and medical record data to create algorithms that identify medical records that contain features consistent with a person having FH for further screening.

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The FIND Collaborative Learning Network

Family Heart Foundation established a Collaborative Learning Network (CLN), FIND CLN to bring academic and community health systems together to learn and share best practices from implementing the FIND Model to identify and treat Familial Hypercholesterolemia. Collaborative Learning Networks differ from hierarchical and typical matrix organizational structures in that it is more flexible and adaptable allowing groups to distribute decision-making to solve problems important to them which is a concept called, “Co-production”.
The FIND CLN is an action-oriented network organizational structure which typically comprises of the following,

Participants (patients, clinicians, researchers, community organizers, patients etc.) aligned around a common goal
Standards, processes, policies and infrastructure to enable multi-actor collaboration
A common where information, knowledge, resources and know-how are created and shared to achieve that common goal

Global Aim:

To save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia (FH) and elevated Lipoprotein(a)

Family Heart Foundation CLN Infrastructure

FIND FH® Webpage Terms of Use

Welcome to the FIND FH webpage (FIND FH) provided by the Family Heart Foundation™ (Foundation). By using FIND FH in any way, you fully and unconditionally accept and agree to the terms, conditions, policies and notices outlined in these Terms of Use.

By using or continuing your use of FIND FH, you hereby acknowledge (a) that you have read and understood the Terms of Use, and (b) that the Terms of Use has the same force and effect as a signed agreement.

THE TERMS OF USE IDENTIFIES THE LEGALLY BINDING TERMS OF USER ACTIVITY WITH FIND FH.

The Terms of Use may be updated by the Foundation from time to time without prior notification, and your continued use of FIND FH will mean that you accept those changes.

1. Accuracy of Healthcare Professional Information.

You certify that the information you provided to Foundation in registering for FIND FH is accurate and true. You shall immediately update your account information with any changes to this information. Any failure to update your account information shall be deemed a violation of the Terms of Use. You shall immediately cease accessing the FIND FH data if at any point you are no longer a health care professional actively providing care and treatment to the patients in the practice location in your account information.

2. FIND FH Content.

The trademarks, trade names and corporate logo displayed on FIND FH by the Foundation are the property of the Foundation. FIND FH may contain information and materials including but not limited to, text, software, photos, video, graphics, audio, images, or data (collectively, “Materials”) which are derived in whole or in part from information and materials supplied by and proprietary to Foundation and other sources, and which are protected by international copyright, trademark and other laws. For the avoidance of doubt, the entire selection, coordination, arrangement and “look and feel” of FIND FH and the Materials are copyrighted as a collective work under United States copyright laws.

Neither the FIND FH data nor the Materials may be modified, copied, reproduced, framed, displayed, transmitted, distributed, or otherwise exploited in any way or decompiled, reverse engineered or disassembled, except that you may view and print the Materials solely for personal, non-commercial informational, or internal business purposes, provided you keep intact all copyright, trademark and other proprietary notices and make no change in or deletion of author attribution. Access to FIND FH does not grant you any right, license or privilege to reproduce, publish or use any Material on FIND FH or any property of Foundation except as expressly set forth herein. Foundation and its third-party licensors retain all of its and their respective intellectual property rights in and to FIND FH and the Materials.

As a convenience to you, Foundation may provide links to websites owned or operated by other entities and persons. If you use these websites, you do so at your own risk. Foundation makes no warranties or representations regarding, and shall not be liable or responsible for, any linked websites, your use of such sites, or the comprehensiveness or accuracy of information or materials appearing thereon or any products, publications, subject matter or services described thereon. Furthermore, links do not imply that Foundation sponsors, endorses or is affiliated or associated with such sites, or that any linked website is authorized to use any trademark, trade name, logo or copyright of Foundation.

3. Use of the FIND FH.

You may not use FIND FH or Materials for any purpose that is unlawful or prohibited by the Terms of Use. By using FIND FH, you agree that you shall not:
(a) use any device, software or routine capable of damaging or otherwise interfering with the proper functioning of FIND FH
(b) use any robot, spider or other automatic or manual device or process for the purpose of harvesting or compiling information on FIND FH;
(c) use any Foundation names, service marks, or trademarks without the Foundation’s prior written consent, including without limitation, as metatags, search engine keywords, or hidden text;
(d) use any material or information, including data, images or photographs, which are made available through FIND FH in any manner that infringes any copyright, trademark, patent, trade secret, or other proprietary right of any party;
(e) upload files that contain viruses, Trojan horses, worms, time bombs, cancelbots, corrupted files, or any other similar software or programs that may damage the operation of another’s computer or property of another;
(f) create a false identity for the purpose of misleading others; or
(g) provide false information on your account registration form, or impersonate someone else.

4. Account.

By using FIND FH, you agree that you are solely responsible for maintaining the confidentiality of your account information, including your password, and for any and all activity that occurs under your account and you agree to notify the Foundation immediately of any unauthorized use of your account or password. You may not use the account, user name or password of any other individual or Foundation at any time without the express written permission and consent of the holder of the account, user name or password. The Foundation will not be liable for any loss or damage arising from your failure to comply with this Section 4.

5. Disclaimer; Limitation of Liability.

The Foundation’s goal is to provide complete, accurate, and up-to-date information on FIND FH. Unfortunately, it is not possible to ensure that any website is completely free of human or technological errors. FIND FH may contain typographical mistakes, inaccuracies, or omissions, and some information may not be complete or current. The Foundation therefore reserves the right to correct any errors, inaccuracies or omissions (including after a request for information or an application has been submitted) and to change or update information at any time without prior notice.

FIND FH DOES NOT PROVIDE MEDICAL ADVICE AND IS NOT INTENDED TO BE RELIED UPON FOR MEDICAL DIAGNOSIS, SERVICES OR TREATMENT. USE OF FIND FH IS NOT THE PRACTICE OF MEDICINE.

FIND FH AND INFORMATION HEREIN ARE PROVIDED “AS IS”, “WITH ALL FAULTS” AND “AS AVAILABLE”, AND NEITHER FOUNDATION NOR ITS AFFILIATES OR LICENSORS MAKE ANY REPRESENTATIONS OR WARRANTIES OF ANY KIND, WHETHER EXPRESS, IMPLIED, STATUTORY OR OTHERWISE, AND THE FOUNDATION AND ITS LICENSORS SPECIFICALLY DISCLAIM ALL IMPLIED WARRANTIES, INCLUDING, BUT NOT LIMITED TO ANY WARRANTIES OF ACCURACY, NON-INFRINGEMENT, MERCHANTABILITY, TIMELINESS, COMPLETENESS OR FITNESS FOR A PARTICULAR PURPOSE, TO THE MAXIMUM EXTENT PERMITTED BY APPLICABLE LAW.

UNDER NO CIRCUMSTANCES WILL FOUNDATION, ITS OFFICERS, DIRECTORS, AGENTS, AFFILIATES AND EMPLOYEES BE LIABLE FOR ANY COMPENSATORY, DIRECT, INCIDENTAL, CONSEQUENTIAL, INDIRECT, SPECIAL OR PUNITIVE DAMAGES WHATSOEVER ARISING OUT OF YOUR ACCESS TO, USE OF, INABILITY TO USE OR PROVISION OF THE CONTENT AND MATERIALS IN FIND FH WHETHER BASED ON WARRANTY, CONTRACT, TORT, NEGLIGENCE, STRICT LIABILITY, OR ANY OTHER LEGAL THEORY, OR WHETHER OR NOT YOU WERE ADVISED OF THE POSSIBILITY OF SUCH DAMAGES. FOUNDATION SHALL HAVE NO LIABILITY OR RESPONSIBILITY FOR YOUR ACTS, OMISSIONS, OR CONDUCT OR ANY ACTS, OMISSIONS OR CONDUCT OF ANY OF YOUR AGENTS OR ANY OTHER THIRD PARTY. IF ANY EXCLUSION, DISCLAIMER OR OTHER PROVISION CONTAINED IN THIS TERMS OF USE IS HELD TO BE INVALID FOR ANY REASON BY A COURT OF COMPETENT JURISDICTION AND FOUNDATION BECOMES LIABLE THEREBY FOR LOSS OR DAMAGE THAT COULD OTHERWISE BE LIMITED, FOUNDATION’S TOTAL AGGREGATE LIABILITY ARISING OUT OF OR RELATED TO THIS TERMS OF USE, WHETHER IN CONTRACT, TORT OR OTHERWISE, AND WHETHER INCURRED WITH RESPECT TO ONE CLAIM, OR CUMULATIVELY INCURRED FROM MULTIPLE RELATED OR UNRELATED CLAIMS ARISING UNDER THIS TERMS OF USE, WILL NOT EXCEED ONE HUNDRED DOLLARS ($100.00 USD). Applicable laws of your jurisdiction may give you additional rights or may limit the effect of the waivers contained herein.

6. Indemnity.

You understand and agree that you are personally responsible for your use of FIND FH and all information accessible through FIND FH. You agree to indemnify, defend and hold harmless Foundation, its business partners, licensors, employees, and agents, from and against all claims, losses, expenses, damages and costs (including, but not limited to, compensatory, direct, incidental, consequential, indirect, special or punitive damages), and reasonable attorneys’ fees, resulting from or arising out of your use, misuse, or inability to use FIND FH, the content, Materials,or information found therein, your use of the information accessible through FIND FH, or any violation of this Terms of Use.

7. Copyright Infringement.

In accordance with the Digital Millennium Copyright Act (“DMCA”) (https://lcweb.loc.gov/copyright/), the Foundation has designated an agent to receive notifications of alleged copyright infringement associated with FIND FH. The Foundation will, upon receiving proper notice as set forth below, use commercially reasonable efforts to investigate notices of copyright infringement and take appropriate action under the DMCA. If you believe that your copyrighted work or the copyrighted work of another party is being infringed, please notify the copyright agent at info@thefhfoundation.org or through the address set forth at the end of this page. When notifying the Foundation of the alleged copyright infringement, all of the following information must be included:
(a) A physical or electronic signature of a person authorized to act on behalf of the owner of the copyright interest that is claimed to have been infringed;
(b) identification of the copyrighted work alleged to have been infringed;
(c) a description of the material that is claimed to be infringing and information sufficient to locate the material on FIND FH;
(d) information sufficient to contact the complaining party, such as a physical address, telephone number, and, if available, an electronic mail address;
(e) a statement that the complaining party has a good faith belief that the use of the material in the manner complained of is not authorized by the copyright owner, its agent, or the law; and
(f) a statement that the information in the notification is accurate and, under penalty of perjury, that the complaining party is authorized to act on the copyright owner’s behalf.

If material is believed in good faith by the Foundation to infringe a copyright or otherwise violate any intellectual property rights, the Foundation will remove or disable access to any such material.

8. Your Personal Information.

Along with the information you provide in creating your account, we may collect non-personal information about the computer, mobile device or other device you use to access FIND FH, such as IP address, geolocation information, unique device identifiers, browser type, browser language and other transactional information.

To the extent that you provide any information, including but not limited to personal information to the Foundation or its representatives, you acknowledge and agree that you do so at your own risk, and represent, warrant and covenant that (i) you are providing only your own information or the information of others which you are authorized to provide to third parties; and (ii) the use of such information by the Foundation will not infringe upon or misappropriate the intellectual property rights or otherwise violate the rights of any third parties, or violate any applicable law, rule or regulation.

You have a right to know about the personal information that we hold about you, including the right to correct, amend or delete the information that we have on file if it is incorrect. If you wish to exercise these rights please contact us by email or postal mail at the addresses below.

9. Use and Disclosure of Personal Information.

FIND FH and Foundation also collects “clickstream” data. The purpose of this collection is to monitor the performance of FIND FH, evaluate the popularity of different sections within FIND FH, and further understand the User experience. It is possible to combine and align these data with the personal information provided by Users. As is the case with many websites, FIND FH uses a technology called “cookies”, which are small data files that are downloaded onto your computer. The use of cookies is standard on the Internet, and allows us to tailor your visits to FIND FH to your individual preferences. We may also contract with third party service providers who assign cookies to conduct site tracking for us. These companies use cookies solely to provide us with aggregate data about site traffic. Although most web browsers automatically accept cookies, you can change your browser to prevent cookies or notify you whenever you are sent a cookie.

The personal information and data collected by FIND FH are used in a variety of ways:
1. To understand our Users’ (demographic, location, condition/disease state, symptom information, patterns of utilization, etc.)
2. To send surveys, materials, clinical trial information, etc., from the Foundation to you about FH, FIND FH, and the Foundation, as well as from some of our 3rd party partners, including health associations, advertisers, pharmaceutical companies, etc.
3. The Foundation reserves the right to share and analyze the aggregate, anonymous clickstream data collected by FIND FH along with information that aligns with these data for purposes of analytics and market research.
4. The Foundation may disclose information if required to do so by law or if the Foundation in good faith believes that such action is necessary to (a) comply with the law or with legal process; (b) protect and defend the Foundation’s rights and property; (c) protect against misuse or unauthorized use of FIND FH; or (d) protect yourpersonal safety or property of that of others. Please note that the Foundation may not provide you with notice prior to disclosure in such cases.
5. As we continue to develop FIND FH, we may merge or partner with other companies or businesses, and in so doing, transfer your information as part of the merger. In such transactions, your information may be among the transferred assets.

10. Do Not Track.

Some browsers have a “do not track” feature that lets you indicate that you do not wish to have your online activities tracked. These features are not yet uniform, so we do not currently respond to such features or signals. Therefore, if you select or turn on a “do not track” feature in your web browser or block or delete tracking cookies, we and our third-party providers may continue collecting information about your online activities as described in this Terms of Use.

11. Opt Out and Changes to Personal Information.

We support the right of our visitors to choose. If you decide that you do not wish to receive special offers or promotional communications, you can contact us at FINDFH@thefhfoundation.org or at the address provided below, indicating that you no longer want to receive information as provided for in this Terms of Use.

12. Termination.

This Terms of Use, and any policies contained on FIND FH are effective until terminated by either party. If you no longer agree to be bound by this Terms of Use, you must cease your use of FIND FH. Your use of FIND FH is at your sole risk. If you are dissatisfied with FIND FH, its Materials, or any terms or policies of the Foundation or contained in this Terms of Use, your sole and exclusive legal remedy is to discontinue using FIND FH.

13. Miscellaneous.

You agree that any dispute arising out of or relating in any way to your use of FIND FH requires that such claim be resolved exclusively by confidential binding arbitration except that, to the extent you have in any manner violated or threatened to violate the Foundation’s intellectual property rights or any individual’s personal information accessible through FIND FH, the Foundation may seek injunctive or other appropriate relief. The arbitration shall be conducted before three neutral arbitrators in the city of Pasadena, CA, U.S.A., in accordance with the expedited rules of Judicial Arbitration and Mediation Services (“JAMS”) as then in effect. No claims of any other parties may be joined or otherwise combined in the arbitration proceeding. Unless otherwise expressly required by applicable law, each party shall bear its own attorneys’ fees without regard to which party is deemed the prevailing party in the arbitration proceeding. Except for punitive and consequential damages (which may not be awarded), and subject to this Terms of Use, the arbitrators shall be authorized to award either party any provisional or equitable remedy permitted by applicable law. The parties shall equally share all JAMS charges and fees associated with the arbitration.

BECAUSE USE OF FIND FH REQUIRES THE ARBITRATION OF ANY CLAIMS OR DISPUTES EXISTING BETWEEN THE PARTIES, NEITHER PARTY WILL HAVE THE RIGHT TO PURSUE THAT CLAIM IN COURT OR BEFORE A JUDGE OR JURY OR TO PARTICIPATE IN A CLASS ACTION OR ANY OTHER COLLECTIVE OR REPRESENTATIVE PROCEEDING. THE ARBITRATORS’ DECISION WILL BE FINAL AND BINDING. OTHER RIGHTS THAT EITHER PARTY WOULD HAVE IF SUCH PARTY WENT TO COURT, INCLUDING WITHOUT LIMITATION THE RIGHT TO CONDUCT DISCOVERY OR TO APPEAL, MAY BE LIMITED OR UNAVAILABLE IN ARBITRATION.

If any part of this Terms of Use is determined by a court of competent jurisdiction to be invalid or unenforceable, it will not impact any other provision of the terms of this Terms of Use, all of which will remain in full force and effect. Any and all disputes relating to this Terms of Use and your use of FIND FH, are governed by, and will be interpreted in accordance with, the laws of the State of California, without regard to any conflict of laws provisions, and shall be brought exclusively in the state or federal courts located in the State of California. You agree that any claim or cause of action arising out of your use of FIND FH or this Terms of Use must be filed within one year after such claim or cause of action arose or it shall forever be barred, notwithstanding any statute of limitations or other law to the contrary. Within this period, any failure by Foundation to enforce or exercise any provision of this Terms of Use or related right shall not constitute a waiver of that right or provision. This Terms of Use constitutes the entire agreement between Foundation and you with respect to your use of FIND FH and supersedes all prior understandings and agreements, whether written or oral, as to such subject matter.

14. Contact Information.

If you have any questions about this Terms of Use, the practices of the Foundation, or your dealings with FIND FH, please contact us through the address below.

Address:

Family Heart Foundation
680 East Colorado Boulevard, Suite 180
Pasadena, CA 91101

(844) 434-6334
findfh@familyheart.org

FIND FH in your practice and your community

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Please provide your information below, and we will follow up with you with more information on FIND FH. If you have any immediate questions, please call us at (844) 434-6334 or email us at findfh@familyheart.org.

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By entering your practice information, you certify that you are a health care practitioner and the individuals that requested the additional information. By accessing FIND FH practice information, you agree to the terms and conditions. You agree that you shall only use the FIND FH practice information as permitted by law, any other use is strictly prohibited

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Familial Hypercholesterolemia (FH)

Homozygous FH (HoFH)

High Lipoprotein(a)