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About Brain Tumor Network and Its Services

BTN is dedicated to supporting you and your loved ones as you navigate the often complicated health care system in the United States. We are a source of reliable information and navigation assistance as you decide on the appropriate brain tumor treatment for yourself or someone in your care.

The following FAQs will help you understand more about BTN, our services and how we support you along your journey.

How BTN helps patients

What is BTN?

Brain Tumor Network is a non-profit organization whose mission is to aid brain tumor patients and their care providers in exploring and navigating to applicable treatment options. The Sontag Foundation has supported brain tumor medical research for many years and from that experience saw a need for providing patients with information and navigation to help them access treatment. Based on that need, Rick and Susan Sontag established BTN and personally funded its start-up. In addition to support from the Sontag family, BTN funds its operations through tax-exempt charitable donations from the public.

BTN is not a health care provider, but it has formed relationships with neurosurgeons, neuro-oncologists and other health care providers around the country. These health care professionals are focused on the treatment of brain tumors and serve as BTN’s advisory network. They are unpaid volunteers and are not otherwise affiliated with BTN. This network is constantly expanding.

What services does BTN provide?

With a patient’s written permission, BTN obtains a patient’s medical records. In some cases BTN also assists with arrangements to have the patient’s tumor pathology specimens sent to a laboratory for testing and analysis. BTN then coordinates a review of the patient’s medical records and tumor specimen analysis, if applicable, with its advisory network. BTN, in consultation with those advisers, then provides the patient and/or his current treating physician with potential treatment options and/or clinical trials to consider.

Can I contact BTN directly or must my physician contact BTN?

Either way is fine. You, your physician or both of you together are welcome to contact BTN toll free at 1-844-286-6110 or by completing this online form to request additional information.

Does BTN provide healthcare services or treatment?

No. BTN is not a health care provider and does not replace or interfere with patients’ relationships with their physicians and treatment teams. While BTN may use the term “patients” to refer to individuals who have been diagnosed with brain tumors, those individuals are patients of their physicians and current treatment teams, not patients of BTN, its advisors or the outside services. BTN and its advisors are providing information and do not form any provider/patient relationship with any individual seeking or receiving such services. Although not a health care provider, BTN seeks to provide informational resources for patients to consider regarding potential treatment options and clinical trials. Patients should carefully discuss this information with their physicians and current treatment teams. Patients also should check to confirm whether the potential options they are considering would be covered by their insurance, health or government plans and, if so, whether pre-certification would be necessary or advisable.

Is BTN affiliated with or does it endorse any particular product or hospital?

No. BTN is a non-profit organization which provides information about potential treatment options and clinical trials for patients to consider and make their own decisions. BTN does not recommend or endorse any specific tests, products, medications, procedures, treatments, opinions, clinical trials, health care facilities, or any other information that may be presented as potential treatment options. BTN’s services are for informational purposes only, and they are not a substitute for continued professional medical advice or treatment. While applying to and participating with BTN, patients should maintain their current appointments and treatments and should always seek the advice of their current treating physicians.

Are BTN's services free, and can all patients with brain tumors participate?

BTN’s informational services are free, and are only available to patients who are 18 years of age or older. And while BTN strives to help all patients who choose to use BTN's informational services, some patients may not benefit. For example, some patients with certain tumor types, previous courses of treatment and other clinical criteria may not be appropriate candidates to use BTN’s informational services. BTN’s services are offered to patients without regard to their race, color, national origin, disability, or insurance/payor status. If a patient has chosen to participate in BTN's navigational services, that patient will be asked to sign medical record release forms to permit their health care providers to send copies of the patients’ medical records to BTN. BTN will pay health care providers’ copying and mailing costs. It is each patient’s own, voluntary decision whether to participate with BTN, and information about potential treatment options and clinical trials is provided to patients merely for their consideration. BTN does not decide any patient’s course of treatment. A patient is free to contact BTN in writing at the following address if a patient decides he or she no longer wishes to receive informational services from BTN. To learn more about BTN’s clinical screening process, please contact us toll free at 1-844-286-6110 or at The Brain Tumor Network, Inc., 816 A1A North, Suite 201, Ponte Vedra Beach, Florida 32082.

How Brain Tumor Network protects your privacy

How does BTN use the health information it receives?

Health information is provided to BTN based on medical record release forms signed by the patient. That health information is then used by BTN for purposes of our operations and administration including, but not limited to, sending the patient’s records to its advisors, consulting with any outside laboratory which reviewed that patient’s tissue/specimens, coordinating with its patient navigators and possibly with advisors regarding their review of medical records and lab results, and identifying potential treatment options and clinical trials the patient may wish to consider. BTN and/or its affiliates also may use the health information in an aggregate database. The aggregate database does not contain patient-identifying information; this means the information has been de-identified so that no individual person is identified. The aggregate database may be used for research and to review and improve the availability of treatment resources for patients with brain tumors. For example, information about tumor samples, diagnoses and treatments may be combined and shared with other doctors, scientists, and researchers to learn more about brain tumors and other medical conditions, to advance knowledge about these conditions, and to discuss possible advances in treatment.

How does BTN store the health information it receives?

Health information received by BTN is stored at BTN headquarters in Florida. Paper forms are stored in cabinets/offices/areas which are secure and not open to public access. Electronic health information is stored on BTN computers/servers, and the computer workstations require log-ins and passwords. Health information is accessed by BTN personnel on a need-to-know basis in order to do their jobs for BTN. BTN advisors are not employees of BTN but are health care providers who are obligated under federal and state laws to maintain the privacy and security of patient information they receive.

Since BTN receives health information, does this mean that BTN is covered by the Health Insurance Portability and Accountability Act (HIPAA)?

No. HIPAA is a Federal law that protects health information, but it does not apply to all persons and businesses. Specifically, HIPAA applies to “Covered Entities” which are defined under HIPAA as health plans, health care clearinghouses, and health care providers which engage in certain health care transactions electronically. Although BTN may receive health information based on medical record release forms signed by patients requesting BTN’s services, BTN is not a “Covered Entity” as defined by HIPAA. Although BTN is not covered by HIPAA, we respect the privacy of the information you provide to us. Health information provided to BTN is used as described in the patient’s medical record release form, such as to coordinate with BTN’s advisors and laboratories. Health information received by BTN is not disclosed to a third party unaffiliated with BTN unless as required by law or subpoena, pursuant to a signed confidentiality agreement, in a medical emergency or with the written permission of the patient or the patient’s authorized representative.

I have also heard that business associates are also governed by HIPAA. Is BTN a business associate under HIPAA?

No. BTN is not a HIPAA Business Associate. Under HIPAA, a Business Associate is a person or organization which receives health information from a HIPAA Covered Entity as part of assisting that Covered Entity in providing services. BTN is not a Business Associate as defined under HIPAA, and therefore does not sign HIPAA Business Associate Agreements. BTN is providing an informational service to the patient, not the Covered Entity.

Are BTN's services also available to patients who reside outside the United States?

BTN’s informational services might be available to patients outside the United States, but the potential treatment options and clinical trials presented for patients’ consideration will be located only in the United States. Please contact BTN for further information.

Does BTN sell patient-identifying health information?

No. We are a non-profit organization whose mission is to provide informational and navigation services to patients for them to discuss with their current physicians and treatment teams. BTN strives to maintain the privacy of health information provided to us. BTN does not sell patient-identifying health information, and we do not disclose patient-identifying information to any third parties for marketing or fundraising purposes.