HIPAA Privacy Notice
HIPAA Privacy Notice for Rare Disease Research, LLC’s Website
(Last updated: July 18, 2022)
THIS NOTICE DESCRIBES HOW MEDICAL INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED AND HOW YOU CAN GET ACCESS TO THIS INFORMATION. PLEASE REVIEW IT CAREFULLY.
This Notice applies to our patients. In our business, we conduct studies to determine the effectiveness of treatments for rare diseases. If you suffer from a rare disease, have volunteered to participate in a study we are conducting and you have been accepted as a study participant, you are a patient. If you provide us with medical information but are not accepted as a study participant, your medical information is also subject to this policy.
If you are accepted as a participant in a study we are conducting, we will provide you with information about the study and ask for your written and informed consent to participate in the study. Your written consent allows us to use your medical information in the study and publish our scientific results.
Federal law governs our use of your medical information. We are required by law to maintain the privacy of your individually identifiable health information, also called protected health information. Federal HIPPA law does not impose restrictions on the use or disclosure of de-identified health information. De-identified health information neither identifies nor provides a reasonable basis to identify an individual.
We may use your protected health information and share it with other persons only in certain circumstances. We may use your protected health information, without your consent, in the following circumstances:
We may use your medical information for treatment purposes. Your health and well-being are very important to us. We use your medical information to evaluate your suitability as a participant in a study. We also use your medical information to treat you as a participant in a research study, in case of an emergency, and occasionally to facilitate your transportation. For example, we may use your medical information to determine what type of diagnostic tests will be performed as part of the study.
We may use your medical information for payment and billing purposes. We do not bill or charge patient participants in studies we administer. However, we do receive compensation for conducting a study from third parties on whose behalf we conduct the study. We may share your medical information with these persons under some circumstances. For example, if diagnostic tests are required for the study, we may provide your medical information to the study sponsor or their third-party provider for billing purposes.
We may use your medical information for our operations. To properly conduct a research study on a drug, to test its effectiveness for treating a rare disease, we may disclose your medical information in connection with our operations. For example, we may share your medical information with our staff.
We may use your medical information for research purposes. All research projects we conduct must be approved through a special review process to protect patient safety, welfare and confidentiality. We may use and disclose your medical information for research purposes under rules determined by applicable law. In connection with a clinical study to see if a drug is effective to treat a rare disease, the study’s sponsor may monitor and audit the study and be exposed to your medical information. In some cases, Federal law allows us to use a patient’s medical information without the patient’s authorization, provided we receive approval from a special review board. For example, HIPPA allows us to transmit for research or public health purposes a limited data set of patient information with many identifiers removed.
We may use your medical information to provide appointment reminders. Our practice is to notify you, to remind you, of up-coming appointments as a participant in a study.
Additional uses and disclosures of your medical information. We may use or disclose your medical information without your authorization or consent, as follows:
As required by State or Federal law.
In the event of disaster for disaster relief efforts to notify your family of your condition and location.
To prevent or mitigate a serious and imminent threat to your health and safety or the health and safety of public or another person.
To coroners, medical examiners and funeral directors as authorized or required by law.
To authorized Federal officials for intelligence, counterintelligence or other national security activities or to provide protection to the U.S. President or other persons.
To the military if you are a member of the armed forces and we are authorized or required by law to do so.
For workers’ compensation or similar programs providing benefits for work-related injuries.
To governmental, licensing, auditing and accrediting agencies.
If you are an inmate, to a correctional institution as authorized or required by law.
To third parties referred to as “business associates” that provide services on our behalf.
To anyone involved in your care or payment for your care, such as a friend, family member or any individual you identify (unless you say no).
For public health purposes.
In response to a court order, subpoena or other lawful instructions from courts or public bodies or to defend ourselves against a lawsuit brought against us.
To law enforcement officials.
Your rights regarding your health information.
You have the right to inspect and obtain a copy of your health information.
You have the right to amend your health information if there is an error.
You have the right to receive an accounting of disclosures of protected health information.
You have the right to receive a paper copy of this notice upon request.
You have the right to request restrictions on certain uses and disclosures of your health information.
You have the right to receive confidential communications of protected health information.
You have the right to be notified if your medical information has been used or disclosed in a way that is inconsistent with the law. We will notify you if your protected health information has been breached.
To exercise any of these rights, please write us with your request:
RDR Privacy Officer
Rare Disease Research, LLC
1730 NE Expressway NE
Atlanta, GA 30329
Unsecure communication. If you choose to communicate with us via unsecure electronic communication, such as regular email or text message, we may respond to you in the same manner in which the communication was received and to the same email address or account from which you sent your original communication. If you use an unsecure method of electronic communication with us, there are risks that your communication and our response will be intercepted and will not be secure. For example, if you make an inquiry through our website and list your email address for a response, our response to you may not be secure.
Additional Information. You may find additional information about our obligation to protect your health information at HHS.gov. You may also write us with questions.
Future Changes to this Notice. We may change our privacy practices and this Notice. We will post a copy of the current Notice on our website.
Complaints. If you believe your privacy rights have been violated, you may file a complaint by writing our RDR Privacy Officer, above. You may also file a complaint with the Secretary of the Department of Health and Human Services, http://hhs.gov/ocr/privacy/hippa/complaints.