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A secure registry of PF patients and primary supporters/caregivers

Trial Location:
Nationwide, internet-based registry
Principal Investigator:

Jeff Swigris, DO, MS
Frederick Wamboldt, MD

Trial Sponsor(s):

Patient Centered Outcomes Research Institute (PCORI)

Trial Objective:

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. Participants will be encouraged to print a copy for their records.
  • Enter a mailing address onto an online form 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.
  • Download a PDF file of the questionnaire/consent form and mail 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 at a toll free number (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.
Compensation:

Not Provided

Who Can Participate:

  • Anyone with PF

            - regardless of cause
            - aged 18-105 years
            - who reads and understands English

  • Anyone who is a primary supporter or caregivers of a person with PF    

The information collected from the Registry participants will be submitted on the Registry intake questionnaire/consent form.  Information that will be included is as follows:

  • Informed Consent
  • Demographics
  • Contact information (primary, alternative, address, email, phone #)
  • Cause of PF (if applicable)
  • Medical Symptoms Related to PF (if applicable)
  • Diagnostic tests
  • Supplemental oxygen use
  • Smoking history
  • Medication
  • Family history

Patients with PF who consent enrollment in the Registry agree 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 Registry 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.
 

Enrollment:

Active Clinical Trials Currently Recruiting

How to Participate:

For more information, you may:

  • Complete the form below
  • Call study personnel at 1.855.609.0010
  • Send a fax to study personnel at 303.270.2240

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