Announcing the Expansion of the PCD Foundation Registry
The PCD Foundation is thrilled to announce the launch of the PCDF Connect Registry, open to any individual with PCD. The PCDF Connect Registry is an expansion of the PCD Foundation’s research efforts and seeks to provide a registry for every patient with PCD. It is distinct from the PCD Foundation Research Registry, which is designed for individuals with a confirmed or highly-likely diagnosis of PCD who are currently followed at an accredited PCD Foundation Clinical and Research Network (CRCN) center.
We understand that many patients with PCD are followed at great institutions outside of the CRCN, and additional patients are not eligible for the Research Registry because their genetic testing and/or ciliary biopsy is not consistent with a confirmed or highly-likely diagnosis of PCD. The PCDF Connect Registry provides a solution to these barriers – allowing people with confirmed, highly-likely, or clinical diagnoses of PCD to enroll in the registry regardless of where they are seen in clinic. This PCDF Connect expansion will allow us to incorporate the information and voice of everyone affected by PCD, regardless of where they are followed for care, and does not require genetic or biopsy confirmation of PCD. The PCDF Connect Registry will also serve as an entry point for individuals with PCD and their families to engage with the PCD Foundation and the larger PCD global community.
To participate, simply fill out the brief enrollment form. It takes less than 5 minutes. Our goal as the PCD Foundation is to assist you or your family member throughout your PCD journey, including connecting you with PCD Foundation CRCN centers and keeping you up to speed on the latest PCD news, events, research, and more.
While the PCDF Connect Registry is an initiative of the US-based PCD Foundation and intended for North American participants (United States, Canada, Mexico and their territories), registrants from outside North America are welcome and we will help you connect with our international partners and your local PCD patient group, if one exists.
Please click the button below to fill out the PCDF Connect Registry enrollment form – it takes less than 5 minutes, and lets us know more about you:
Frequently Asked Questions:
This PCDF Connect Registry is a companion registry to the PCDF Research Registry and will serve as an entry point for engagement with the PCDF for anyone diagnosed with PCD, suspected, or currently on the diagnostic journey to a diagnosis of PCD. The PCDF Research Registry, on the other hand, is a formal natural history study of people with PCD confirmed primarily by genetics, and to a lesser extent, ciliary biopsy. This data meets the regulatory requirements to be used in specific types of FDA-acceptable research. Both have the goal of accelerating our understanding of PCD and advancing PCD research.
PCD is difficult to diagnose. Confirmation of diagnosis remains a challenge for many individuals who clearly have PCD, yet regulatory bodies require confirmation of diagnosis when considering approvals for therapies. For this reason, the Research Registry initially focused on registering individuals whose PCD was confirmed by genetics or by biopsy at one of our accredited centers, with the goal to expand to the larger community over time. We have achieved an important milestone of 1,000 confirmed PCD cases in our Research Registry and now is the time to expand to the entire PCD community!
Absolutely! We encourage individuals in the PCDF Research Registry to also participate in the PCDF Connect Registry, as they provide uniquely different opportunities and information about the PCD landscape.
Yes. All information submitted through the enrollment form is controlled by the PCD Foundation and stored in a secure, HIPAA-compliant computer database maintained by REDCap, based at Vanderbilt University. Data can only be accessed with permission from the PCD Foundation.
You can withdraw yourself from the registry at any time by contacting KristinWS@pcdfoundation.org. Just be aware that we will be unable to remove any of your (unidentifiable) data that was used prior to withdrawal. For example, if we share the number of registered individuals from your region in a public forum prior to your withdrawal, we will not be able to ‘unshare’ that information post-withdrawal.
Registry Comparison
| Category | PCDF Research Registry | PCDF Connect Registry |
|---|---|---|
| Overall Purpose | Enroll and track patients with confirmed (or probable) PCD for research purposes. Patient participation helps clinicians better understand the disease and improve important outcomes such as diagnostics, clinical care, and quality of life. | An entry point for patients and families to connect with the PCD Foundation. This allows the PCD Foundation to assist patients and families with identifying the correct resources to support the patient journey, including connecting with CRCN accredited centers as relevant. |
| Eligibility | Individuals who have documentation of confirmed diagnosis of PCD, are established at a PDF Foundation Clinical and Research Center Network (CRCN) center in North America, and have provided written informed consent. | Individuals diagnosed with, or with suspected PCD who may, or may not, be already be enrolled in the PCDF Research Registry. The PCDF Connect Registry is intended for North American Participants (United States, Canada, Mexico and their territories). If you are not a North American patient, you are still welcome to register, and we will connect you with the patient organization in your region |
| How to Enroll | PCD Center physicians or staff will discuss the PCDF Research Registry eligibility requirements with you and, if you are interested in proceeding, get your consent to participate. You will need to sign a formal consent to be part of the PCDF Research Registry. Options to enroll in the study remotely are also available. | The PCDF Connect Registry is by self-referral, does not require signing a consent, and you become part of the PCDF Connect Registry by filling out the enrollment form. |
| Data Collected | Demographic information, diagnostic test results, clinical symptoms, medical/surgical history, current medical treatments, family and social history, etc. | Contact information, how and where diagnosis was made, relationship with CRCN center (as relevant). |
| Data Security | All data is controlled/owned by the PCD Foundation and stored in a secure, HIPAA-compliant computer database maintained by REDCap. Access to center-specific data is limited to key study personnel at the center. Researchers can apply to use anonymized data from the Registry. Such applications are evaluated on a case-by-case basis and approved by an oversight committee of participating PCD experts. | All data is controlled/owned by the PCD Foundation and stored in a secure, HIPAA-compliant computer database maintained by REDCap. Data can only be accessed with permission of the PCD Foundation. |
| What is Data Used For? | Research to improve the understanding of PCD, including risk factors, diagnostic testing, clinical treatment outcomes, and clinical trial design to advance PCD therapies. This data also supports CRCN center healthcare teams in providing optimal care, driving quality improvement, and establishing evidence-based care guidelines for PCD. | Patient identification and clarifying PCD demographics in North America. Assessing needs and allocation of resources to ensure patients across the region have access to expert services. Providing a platform where all individuals have a voice in shaping PCD-related priorities and policies. |
| Is Data Updated? | Yes – information is continuously added to the PCDF Research Registry after each time a participant visits a CRCN center. | Initially, one-time entry with the goal of annual updates and ongoing survey opportunities. |