HIM 220 Module Six Worksheet
Ashley Albright
1. Which registry did you choose? The US Registry for Fibromuscular Dysplasia
2. Who can participate in this registry?
"In order to participate in the registry for Fibromuscular Dysplasia, you must be seen as a patient
at one of the seventeen centers that are available. In order to participate in the registry, the patient
must sign a consent form like what is used in clinical research although this registry is a data
registry only and no experimental research is being collected. This data includes elements such
as date of diagnosis, types of tests conducted and results of these tests, past medical history,
family history, subsequent clinical events, and clinical outcomes." (FMDSA, 2021)
3. Describe the history of this registry, including why it was formed
"In 2007, the FMDSA formed a registry to better understand the disease and its treatment. The
goals behind the registry are to identify patient characteristics associated with fibromuscular
dysplasia, potential markers of the disease and used imaging and treatment quality." (FMDSA.
2021)
4. Explain how this registry is funded.
"The registry for Fibromuscular Dysplasia is solely funded by members of the registry in order
to fund research, provide education for medical professionals, and to advocate to raise awareness
of FMD. All contributions that are made to the FMDSA are tax deductible. Memberships must be
renewed annually." (FMDSA, 2021)
5. Why are registries important to the healthcare field?
"A healthcare registry is a collection of care information related to specific diseases, conditions,
or procedures that make health record information available for analysis and comparison."
(Sayles and Kavanaugh-Burke, 2021) "Registries help to improve health care quality and patient
safety by comparing effectiveness of different treatments, evaluating different approaches to a
procedure, and monitoring the safety of devices." (American Medical Association, 2014)
6. What types of information and data are sent to this registry?
"Clinical data that is sent to this registry includes date of diagnosis, types of tests conducted and
the results of these tests, past medical history, family history, subsequent clinical events, and
clinical outcomes. In order to enter a patient's data into the registry, the physicians must have
consent. Each patient is assigned a unique identification number which is how the physician
identifies that patient. (FMDSA, 2021)
7. What is secondary data and why is it important to the healthcare field in general?
"Secondary data is data that is derived from primary data such as patient health records including
sources such as indices and registries. Secondary data is used to conduct research, address
population health issues, and for administrative purposes." (Sayles and Kavanaugh-Burke, 2021)
8. Explain the type of policy that should be put in place to protect the information in your chosen
registry's system.
The FMDSA has implemented security measures to protect patient information. Each patient is
assigned an identification number in the system and that is how the patient is identified by the
physician that is treating the patient. In addition to patients having an identification number