Plan for a new registry to collect medical data and complete a report on it.

Students will develop a plan for a new registry to collect medical dataand complete a report on it. The registry should be one in which there is
a need for following patients with that medical condition or diagnosis. It is
good to pick something you are interested in. This could be a disease in
your family or a medical condition someone in your family has or a friend
has.
Information to be included:
● Purpose of the registry (i.e. what outcomes can be expected)
● Data to be collected
● Where the registry will be located (i.e. hospital, clinic, state level,
federal level)
● Who will collect/enter/manage the data
● What type of follow-up will be done (including data collected on
follow-up) and for how long
● Who will have access to the data in the registry
● How long the data will be kept
● Any other information you feel is important
Grading
● The information should be arranged by each of the above areas.
● Start off with a section called “Purpose of Registry” and tell me
why this is an area that should be followed and what outcomes
you expect from gathering this information.
● Next, tell me what data will be collected. Don’t get too detailed
here since it is not feasible to collect a lot of data items.
● Then where will your registry be located? For example, tumor
registries are located in most hospitals but all the hospitals in
Oregon send the data to the state of Oregon. The Oregon
vaccination registry is located at the state and the physician
offices send the information directly to the state. You need to
think of where your patient is diagnosed, for example, hospitals
don’t do vaccinations and that is why it goes from the physician’s
office directly to the state.
● The next section is on follow-up. After the initial gathering of
information, how often should the patient’s file be updated?
● And how long will you the collecting data, five years, ten years,
until the patient dies? For example, if I am following kids who
receive human growth hormones I probably want to follow them
until they have children to see if there is any damage to the
reproductive organs.
● The next section is on who will have access to the data.
● Next, how long do you keep it all,
● and finally, anything else you feel is important to add on your
registry.
Registry Topics
These are some suggestions – you can come up with other ideas if you
want.
● Children receiving human growth hormones
● Patients receiving artificial hip or knee replacements
● Patients receiving LASIK (Laser-Assisted In Situ Keratomileusis)
● Patients diagnosed with tuberculosis
● Babies conceived via in-vitro
The following are common registries you cannot report on:
● Tumor/Cancer registry
● Trauma Registry
● Immunization registry
● Diabetes Registry