Announcing the Launch of the PCD Foundation North American Primary Ciliary Dyskinesia Registry (NAPCDR) The PCD Foundation is pleased to announce the creation of a patient-reported registry for individuals with primary ciliary dyskinesia (PCD). Information collected through the NAPCDR will help researchers understand more about PCD from the perspective of those actually affected. It will also allow us to identify where individuals with PCD are geographically located so we can more effectively plan future services. The NAPCDR is a first-ever effort to systematically capture information about PCD from those who have first-hand experience with it. It was developed in conjunction with PCD medical experts and has been reviewed and approved by an Institutional Review Board (IRB) to ensure patient privacy and human research subject protections are adequate. You will be receiving a link to access the NAPCDR site shortly. Here are a few things to consider prior to clicking the link: 1.) Because the NAPCDR is covered by an IRB, YOU MUST READ AND SIGN THE INFORMED CONSENT in order to enter data in the NAPCDR. 2.) We are also asking that children old enough to understand the role of data collection (generally around age 7 or 8) and that their de-identified information is being added to the NAPCDR provide their ASSENT to participate. 3.) Once you begin the registry, you must complete it. If you exit out of the registry prior to completing it, you will have to start over. For this reason, we recommend you REVIEW THE QUESTIONS PRIOR TO STARTING. A .pdf file of the questions can be found here. 4.) If you have multiple affected family members, please fill out a separate registry entry for each. We estimate completion to take between 10 and 30 minutes per individual registry entry. 5.) ALL NAPCDR ENTRIES COMPLETED BY MAY 10, 2014 WILL AUTOMATICALLY BE ENTERED INTO A DRAWING TO WIN AN APPLE iPAD OR ONE OF FIVE RED BOX MOVIE RENTAL CARDS. We are very excited about this major milestone for the PCD community! For more in-depth information on the importance of patient registries, please see the article, Registries 101: What Patients Need to Know, below. 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 if 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 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 to enter 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 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 (see article in this newsletter) 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! Please see the previous post for link information!
Posted on: Fri, 02 May 2014 03:13:03 +0000
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