informed consent template for participating in.DOCXVIP

Informed Consent Template for Participating in Rare Disease RegistriesDefinitionsFor the purpose of this Consent form, “the patient” refers to the person diagnosed with XXX (insert disease being studied). Registry information will be collected on patients who are diagnosed with XXX (insert participation criteria). “You” refers to the person providing the information, who may be the patient himself or herself, or a family member or guardian who is legally responsible for the care and health of the patient. PurposeA patient registry collects and stores patient medical information, family history and other related information for use in medical research. The purpose of the (insert title) registry is to collect and store medical and other information from individuals with the same or related disease (Each registry may insert additional aims/purposes). In addition to what is written here, you will be given supplemental information about the XXX Registry.Some registries are also linked to a biobank, which is a place that stores tissue, blood or other samples from patients. If there is a biobank for people with your disease, you may be asked to donate your samples to the biobank. You will be asked to provide separate consent for donating your samples to the biobank.Patient information in this registry will be used for medical research and experimental clinical trials to better understand rare diseases and to develop new treatments. Researchers studying XXX need accurate information to understand how the disease affects people. In addition, researchers may access the XXX registry to locate people who may be eligible to participate in particular studies, such as studies to test new treatments. (Each registry may insert additional reasons to explain why the registry is important.) The XXX registry is sponsored by YYY and there is no cost to you to participate.What will happen if you join this registry?If you join this registry, you will be asked to provide medical information