The creation of a registry for mesothelioma is crucial for the advancement of the mesothelioma science and development of effective treatments for this cancer. Other conditions, diseases, and cancers have seen incredible progress and increased life expectancy of their patients as a result of registry implementations. Patient registries have played a crucial role especially for diseases that are considered rare and for which scientists have a difficult time accessing enough data to conduct their research (or, for example, for which it is difficult to find enough patients to enroll in clinical trials in order to complete them). Researchers around the world need disease registries to bring together information about relatively rare diseases, such as mesothelioma. To that end, the Global Rare Diseases Patient Registry Data Repository (GRDR®) is a process that allows the creation of a registry for any rare disease population. The needs and background are .
The language in the ‘Mary Jo Lawyer-Spano Patient Registry Act of 2015’ states:
“The Secretary shall ensure that privacy and security protections applicable to the registry under this section are at least as stringent as the privacy and security protections under HIPAA privacy and security law (as defined in section 3009).”
The goal of a patient registry is to provide scientists with information they need to advance their research. However, this information is strictly safeguarded and only made available to scientists through a process by which they have to apply and demonstrate their particular relevant and valid need for these data. Also, all data is de-identified, meaning that patients’ names are stripped away from other information, and are instead replaced by unique numbers.
De-identification is the process used to prevent a person’s identity from being connected with information. Common uses of de-identification include human subject research for the sake of privacy for research participants.
The language in the bill itself requires that the registry be created in consultation with the following experts in mesothelioma and registry creation:
“(1) epidemiologists with experience in disease surveillance or registries;
“(2) representatives of national voluntary associations that focus on mesothelioma or have demonstrated experience in research, care, or patient service for mesothelioma;
“(3) health information technology experts or other information management specialists;
“(4) clinicians with expertise in mesothelioma; and
“(5) research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes.
General Patient Registry Information
To learn more about patient registries, please visit the following links on the National Institutes of Health (NIH) website: