Pulmonary Fibrosis Contact Registry

Detailed information can be found at our website at www.pulmonaryfirbrosisresearch.org.

Who will be in the Registry?

Anyone who is at least 18 years of age, can read and understand English, and either

1. diagnosed with PF or

2. a primary supporter or caregiver of someone living with PF

How the Registry works

Patients with PF consent to be enrolled in the Registry and may consent to be contacted by
Registry personnel about opportunities for them to participate in research studies. Some of
these studies (e.g., "Observing the Effects of Supplemental Oxygen on Patients with Pulmonary
Fibrosis") will be conducted by Dr. Swigris and his research team—these studies will be
considered Registry-affiliated. Registry participants are free to enroll in any study they
wish—whether Registry-affiliated or conducted by investigators not affiliated with the
Registry—i.e., non-Registry-affiliated studies. It is assumed the investigators conducting
those studies will adhere to regulations governing the protection of human subjects in
research. Consider a hypothetical example: an investigator in Michigan is conducting a study
of the effects of oral honey on PF-related cough and would like Registry participants to
consider enrollment. The investigator would petition the Registry and, if approved by the
Registry Oversight Committee, Registry personnel would contact potentially eligible Registry
participants to inform them of the study. The participants would then decide whether or not
to contact the investigator in Michigan to be considered for enrollment. The investigatory in
Michigan would be responsible for discussing the study with any potential subject, obtaining
informed consent and conducting the study. All of these fall outside the purview of the
Registry or its personnel.

How subjects will enroll in the Registry

Eligible participants must fill out an intake questionnaire/consent form. Contact information
provided to receive a questionnaire is not stored by the Registry Data Coordinating Center
(DCC) or by the study coordinator. Subjects may obtain the intake questionnaire, complete it,
and submit it four different ways:

- Complete the questionnaire/consent form and submit it online at
https://dccweb.njhealth.org/sec/P3F_Swigris/Index.htm. Participants will be encouraged
to print a copy for their records.

- Enter a mailing address onto an online form at
http://pulmonaryfibrosisresearch.org/contact and have a hard copy mailed to the subject.
Once a signed questionnaire/consent has been sent back to the study coordinator, a copy
will be made and mailed back to the participant for his/her records.

- Fill out the form electronically at
https://dccweb.njhealth.org/sec/P3F_Swigris/Index.htm and print a copy of the form, or
print the form and fill it out by hand and mail or fax the completed questionnaire to
the study coordinator who will then hand it off to the DCC at National Jewish Health.
Participants will be encouraged to print a copy for their records.

- Call the study coordinator toll-free at 1-855-609-0010 and have him/her mail a hard copy
of the questionnaire/consent form to the subject. Once a signed questionnaire/consent
has been sent back to the study coordinator, a copy will be made and mailed back to the
participant for his/her records.

Inclusion Criteria:

- Anyone who self-reports a diagnosis of pulmonary fibrosis and is over 18 years of age
will be included in the Registry.

- Anyone who self-reports being a primary supporter or caregiver of someone living with
pulmonary fibrosis and is over the age of 18 will be included in the Registry.

- Whoever consents to be enrolled in the Registry will presumably be able to read and
write in English.

Exclusion Criteria:

- Failure to meet inclusion criteria