Registries 101: What Patients Need to Know
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Registries 101: What Patients Need to Know


We are living in the age of ‘big data.’ Everywhere we turn we are being asked to provide information about ourselves. This information is used in many ways, but none as potentially important as data collection for healthcare. Even before the advent of the Internet and social media, advocates for better health were collecting large volumes of data on groups of people with the same disorder. Commonly known now as ‘clinical registries’ these data sets provide critical information on the natural history (anticipated disease progression over time) of specific disorders by collecting important data points on lots of individuals with specific conditions that can be tracked for long periods of time. This data can then be analyzed in a systematic fashion and used to help shape research and treatment priorities for the future.

But clinical registries are just one example of the many important types of data collection going on in healthcare right now. There are many types of registries and often they have different goals and enrollment criteria.

Types of Registries

Clinical Registry. As noted above, clinical registries are highly reliable, professionally collected sets of data often managed by a medical center, academic institution or large patient advocacy organization. For many years the word ‘registry’ conjured up the picture of what we now think of as ‘clinical registry. The data is high-quality, accurate, and reliable and is often taken directly from patient medical records. This level of excellence requires significant expertise and clinical registries are generally quite expensive.

An example of an excellent clinical registry is the Cystic Fibrosis Foundation (CFF) Registry. The CFF Registry has been in operation for decades. Because the CFF has a robust network of clinical centers able to enter the data, their registry represents data from the majority of people with CF in this country. The information contained in a well-managed clinical registry is considered the most reliable. It is also the most expensive type of registry to maintain.

Patient Reported Registry. In recent years, another type of registry has become increasingly popular. So-called ‘patient-reported’ registries differ from clinical registries in that affected individuals enter data themselves. Ideally, this information is still pulled from medical records, but affected individuals can provide additional data beyond what is desirable in a clinical registry and have some autonomy about when and how often to enter.

Because patient-reported data often relies on memory and/or non-medical people may have difficulty with terminology or test result interpretation, etc., patient-reported registries are not seen as being quite as reliable as clinical registries. However, they can still yield a great deal of information if done correctly, with the proper privacy and identification processes put in place. They are less expensive than clinical registries, but there are still costs associated with data management and proper security for protected health information.

Administrative/Contact Registry. Contact or administrative registries offer an opportunity for individuals interested in ongoing communication with a group or entity (e.g. patient advocacy org, research group) to ‘register’ their name and contact information.

Sometimes contact registries exist only for a specific project or program and registration with the contact registry only pertains to the specific project or program. An example of this is the Genetic Disorders of Mucociliary Clearance Consortium Contact Registry (http://rarediseasesnetwork.epi.usf.edu/gdmcc/takeaction/index.htm) which registers individuals interested solely in the GDMCC research study (aka: UNC PCD study).

Why so many Registries?

With the Internet providing easy access for data collection, you may feel bombarded with requests for your information. As noted above, part of this is because there are several kinds of registries and laws related to protection of personal health information often prevent one registry from sharing information with another. Also, the goals and aims of registries may differ, so the data collected in one registry may be of limited value to another.

It is a good idea to use caution when sharing personal health data for yourself or your child, however. Not all registry efforts are aimed at improving the health of individuals with specific conditions. Some are aimed at making money for the registry ‘owners’ through selling data for marketing purposes. Data mining ‘share your story’ opportunities is one way patients can be persuaded to freely give away medical information to groups that may be using it for personal profit. Remember—your medical data is a valuable asset when used appropriately. Be sure that anyone you give it to is using it to benefit you and not them!

PCD Foundation Registry Efforts

Creating a PCD clinical registry has been a goal of the PCDF since our inception. With the expansion of our clinical centers network we now have reliable resources for entry of patient clinical data. We will start with the PCDF clinical centers sites and expand the clinical registry reach to other medical facilities as resources allow.

A PCD Registry for Everyone Coming in April

To supplement the clinical registry effort, in the next few weeks the PCDF will be launching the North American PCD Registry (NAPCDR), a combined contact and patient-reported data registry that will be open for entry by anyone with PCD.  The data points included in this registry have undergone vigorous medical review and the processes for managing the data have been approved by an institutional review board (IRB) for protection of patient health information.

How You Can Help

For the NAPCDR to have optimum value it needs to broadly represent the spectrum of PCD. Every individual’s data is important in order to provide this broad picture of PCD. Now is a good time to start collecting your/your child’s medical records so you have them handy for entry into the NAPCDR.

More information will be coming in the days ahead for our big April NAPCDR launch!


NJ Boy with PCD Enters 'White Cloud' Contest
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Sean Green, a 12 year old boy with PCD from New Jersey, is a finalist in the White Cloud tissue drawing contest. The winner will receive $15,000 for his/her medical facility (Children's Hospital of Philadelphia or 'CHOP,' in Sean's case) and their artwork will be featured on White Cloud tissue boxes for a year! Sean is doing a terrific job representing PCD and CHOP, as seen in this clip from WFMZ News

To vote for Sean, please 'like' the White Cloud Make Miracles page on Facebook and vote for Sean. 


Dr. Leigh Discusses Nasal Nitric Oxide in PCD
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Dr. Margaret Leigh from the University of North Carolina, Chapel Hill discusses her recent landmark article on nasal nitric oxide (nNO) in PCD in this podcast with the American Thoracic Society.
PCD Clinical and Research Centers Update
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Introducing the PCD Foundation Clinical and Research Centers Network

Access to high-quality diagnostic and treatment for all individuals with primary ciliary dyskinesia (PCD) is a primary goal of the PCD Foundation. As we continue to learn more about PCD and develop better standards for identifying affected individuals and treating the consequences of inherited ciliary dysfunction, the time is right to create a network of centers with PCD expertise.


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