North American PCD Registry (NAPCDR) |
Welcome to the North American Primary Ciliary Dyskinesia Registry (NAPCDR)
Thank you for your interest in the NAPCDR, a patient-reported health data collection (registry) program of the PCD Foundation. Information collected in this registry will help interested 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 referral services.
There are some important points to consider prior to participating in the NAPCDR:
1. The NAPCDR is open to any person with PCD from any part of the world who wishes to participate. However, the primary goal of this program is to expand the North American clinical network and affected individuals from North America are specifically invited to participate.
2. The NAPCDR is ENTIRELY VOLUNTARY. While we strongly encourage affected individuals to participate in legitimate efforts to expand knowledge of PCD through data collection, participation is a personal decision and this may not be the right fit for you. Choosing not to participate will in no way impact your relationship with the PCD Foundation.
3. All participant's must read and sign the Informed Consent document on the following page in order to enter data in the survey. This Informed Consent has been approved by an Institutional Review Board (IRB) and was carefully crafted to ensure patient protections.
There are some important points to consider prior to participating in the NAPCDR:
1. The NAPCDR is open to any person with PCD from any part of the world who wishes to participate. However, the primary goal of this program is to expand the North American clinical network and affected individuals from North America are specifically invited to participate.
2. The NAPCDR is ENTIRELY VOLUNTARY. While we strongly encourage affected individuals to participate in legitimate efforts to expand knowledge of PCD through data collection, participation is a personal decision and this may not be the right fit for you. Choosing not to participate will in no way impact your relationship with the PCD Foundation.
3. All participant's must read and sign the Informed Consent document on the following page in order to enter data in the survey. This Informed Consent has been approved by an Institutional Review Board (IRB) and was carefully crafted to ensure patient protections.