Introduction

In most cases, a single LTRC study visit will be performed to collect clinical data for LTRC subjects. This visit should not require more than a total of four to six hours to complete, but this visit may take place over a several-day period.  For transplant patients, clinical data should be updated every six months while the patient is on the transplant waiting list.

Collection of clinical data will include questionnaires, a CT scan and pulmonary function testing. Blood specimens will be obtained both for laboratory testing as well as for serum and plasma storage.

The patient’s record will be reviewed to:

1. Determine the eligibility of the patient to participate in the LTRC,
2. Collect information about previous CT scans that were performed in the LTRC that may be used as CT scan data for the LTRC,
3. Collect qualifying pulmonary function testing data that may be used as data for the LTRC,
4. Gain other information that may assist or otherwise supplement the data collection that will primarily be carried out by performing interviews and collect LTRC protocol-related procedures.

The medical record will only be used to collect information that is relevant to the collection of the information listed in the study forms.

No procedures can be carried out after a patient has his/her surgical procedure. The tests are designed to assess the patient’s clinical condition prior to surgery. However, the collection of historical information from the medical record or by patient interview might be possible after surgery. In this case, tests may be missing and history may be filled in after surgery.

The primary goal of the LTRC is to collect lung tissues for study. However the presence of lung tissue without clinical data is of limited value, which makes the collection of clinical data a major secondary goal for the LTRC. The LTRC investigators have set a goal of 90% completion of phenotyping data for the study.

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    Interviews and Questionnaires

    Pulmonary Function Testing