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Emphysema Research Registry and Biosample Repository

Emphysema Research Registry; Screening Study and Genetic Testing

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
21 Years and older
Sex
All sexes
Healthy volunteers
Accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Procedures mentioned: Questionnaires, Blood draws

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "The breathing questionnaires are known as the St."
  • "George's Respiratory Questionnaire (SGRQ), the Medical Research Council Dyspnea Questionnaire (MRCDQ) and COPD assessment Test (CAT)."
  • "These are paper and pencil questionnaires that inquire about respiratory symptoms, quality of life, and shortness of breath."
  • "The initial blood work will consist of two samples."
  • "A separate consent form, Consent 2, addresses this second blood draw in detail."
  • "In addition to the initial blood draw, the participant will be asked to contact the center when they are experiencing a COPD exacerbation (increased cough, change in sputum, shortness of breath, etc.)."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study collects health information and DNA (genetic material) from people with emphysema or COPD, lung diseases that make breathing hard. Researchers will use this registry, or list of patients, to better understand emphysema, study new treatments, and find people for future studies. The study includes breathing tests and stores DNA samples.

The Comprehensive Lung Center (CLC) at the University of Pittsburgh Medical Center (UPMC Health System) provides patients with any type of breathing or lung disorder a full range of diagnostic and therapeutic services. The Emphysema/COPD Research Center (ECRC) is a specialty clinic, within this center, that attempts to advance the understanding of emphysema and to evaluate new therapies for patients with emphysema. The Emphysema Research Registry will enable pulmonary research physicians to: 1) gather information and create a research registry of people who have been diagnosed with emphysema; 2) utilize this research registry with the purpose of conducting research that attempts to advance the understanding of emphysema and to evaluate new therapies; and, 3) use the research registry to identify potential candidates for future research programs. These aims will be achieved by the collection of DNA (genetic material)for analysis and storage in addition to pulmonary function tests and other medical information.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • You must have COPD, a long-term lung disease that makes breathing hard, based on your medical history, breathing test results, or lung images.

Who can't join

    Simplified for readability. The official criteria below are what the study team uses.

    Official eligibility criteria

    Inclusion Criteria: * Patients would be required to have COPD based on at least one of the following: clinical history, pulmonary function results, or radiographic results. Exclusion Criteria: * none

    Study sites (1)

    PA