Pulmonary Fibrosis Foundation Expands Research Drive With Community Registry

Shortly after my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I spoke with my pulmonologist, Dr. Steven Nathan, about participating in research. One of the first projects I joined was the Pulmonary Fibrosis Foundation (PFF) Patient Registry.

The PFF Patient Registry began following patients in 2016, but participation was capped at 2,000 people. I was one of those patients. During my regular clinical visits at Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia, my clinical data were shared with the PFF Patient Registry.

But 2,000 patients only captured a small number of the potential patient population.

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Something was missing

The PFF Patient Registry covered patients with interstitial lung diseases (ILD), including pulmonary fibrosis (PF). That, coupled with the number of patients being capped, was not providing clinicians, researchers, and investigators with the breadth of information they needed.

Make no mistake, though — the information provided by the PFF Patient Registry is a rich data source for all those seeking to better understand PF. It contributes to the work they do today in pursuit of treatments and a cure.

The data collected in the PFF Patient Registry have been put to good use by researchers. Information from the registry already has been or is being used in almost 40 studies, representing more than $32 million in disease research. These studies are taking on characteristics of patients selected for transplants; outcome differences based on sex or smoking status; characteristics associated with people using oxygen; and more.

The PFF Community Registry

This year, the PFF took the next step in developing the project by launching the PFF Community Registry. Junelle Speller, vice president of the PFF Registry, told Pulmonary Fibrosis News, “The PFF Community Registry is fostering a community of patients, lung transplant recipients, caregivers, and family members all with the same goal: finding answers to better diagnose, treat, and potentially cure PF and ILD. We need your help to advance PF research and make a difference for those impacted by these diseases for today’s and future generations.”

This registry is different for a couple of key reasons I want to highlight to encourage your enrollment. The first difference is that the inputting of data is not limited to PFF Care Center Network sites. Data input is done by registered participants in a guided set of queries and screens to assist in collection. As with any medical study, an informed consent document ensures that patients understand the registry’s purpose, protections, and oversight.

Participants will receive a newsletter about the community registry featuring highlights and activities.

In my view, the most significant change is that the PFF Community Registry is not limited to patient participation. Rather, it’s open to patients, caregivers, and family members. The patient portion of the community is open to all patients, beginning with diagnosis.

Patients

Patients can now be followed through all stages of their journey. Those who participated in the patient registry are invited to enroll in the new community registry so that they can provide data directly.

New patients self-enroll in the PFF Community Registry. The initial data input took me less than an hour to answer the questionnaires and acknowledge the agreements required to participate.

I received a bilateral lung transplant in July 2021. Post-lung transplant patients are a part of the patient community in this version of the registry. This is an opportunity to provide researchers with a more complete patient experience.

Caregivers

Another feature being debuted in the PFF Community Registry is the collection of data on the nonprofessional caregiver experience. Caregivers can share their experiences with details about how these diseases have affected their lifestyles and lives with the patients.

Family members

Also new to this version of the registry is a section for a patient’s biological family members. Parents, children, and full and half-siblings with a direct biological connection to patients are some examples of family members being sought to join the registry.

This section will provide greater insight into familial pulmonary fibrosis.

The power of numbers 

One of the greatest challenges in research is finding enough participants to validate the research. Every patient, caregiver, and family member, regardless of where they live in the U.S., can participate in the community registry, which is a data-driven observational study.

A collection of frequently asked questions is also available.

Now is the time

With Pulmonary Fibrosis Awareness Month this September, there’s no better time to become a part of the solution. If you qualify as a member of one of the groups in the registry, please consider this opportunity to support research.

For over five years, I’ve sought to be a part of every research opportunity I qualify for. This includes both observational and interventional studies. My personal goal is for future generations to not have to know about PF. This is an opportunity for this community to make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.