Clinical Trial: Pulmonary Fibrosis Contact Registry

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational [Patient Registry]

Official Title: Pulmonary Fibrosis Contact Registry

Brief Summary: As the name states, contact registries securely store contact information from groups of reasonably well-characterized patients (or primary supporters/caregivers) who are interested in being informed about ongoing or future research opportunities. Pulmonary fibrosis (PF) is a condition for which effective therapies have remained elusive, making drug trials and interventional research studies a mainstay in the PF arena over the last decade and for the foreseeable future. A PF Contact Registry will be a conduit to collect, analyze, and disseminate de-identified, group-level data on the clinical phenotypes of PF patients and will house contact information from patients who wish to be informed about research opportunities for which they may qualify. Data contained in the Registry will help inform research hypotheses and guide investigators as they develop research protocols by providing them with numbers of potential subjects who meet particular inclusion/exclusion criteria.

Detailed Summary:

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 responsi
Sponsor: National Jewish Health

Current Primary Outcome: Number enrolled [ Time Frame: 20 years ]

This is a contact registry. We will enroll as many patients and primary supporters/caretakers as possible.


Original Primary Outcome: Same as current

Current Secondary Outcome:

Original Secondary Outcome:

Information By: National Jewish Health

Dates:
Date Received: August 31, 2013
Date Started: August 2013
Date Completion: January 2040
Last Updated: November 17, 2014
Last Verified: August 2013