Assessment of Safety of Air Travel in Patients With Pulmonary Langerhans Cell Histiocytosis
| Status: | Recruiting |
|---|---|
| Conditions: | Infectious Disease, Hematology |
| Therapuetic Areas: | Hematology, Immunology / Infectious Diseases |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 2/15/2017 |
| Start Date: | June 2016 |
| End Date: | December 2018 |
| Contact: | Elizabeth J Kopras, BA |
| Email: | koprasej@ucmail.uc.edu |
| Phone: | 513-558-7205 |
The aim of this study is to conduct survey-based assessments for the safety of air travel in
patients with pulmonary Langerhans cell histiocytosis (PLCH). The study will enroll patients
through the clinic network at Rare Lung Disease Consortium (RLDC) and through the
Histiocytosis Association website. Patients will have access to the questionnaire via REDCap
(an online data management system) and each patient will be provided with a link to complete
the survey. The investigators plan on enrolling approximately 200 patients with PLCH for the
purpose of this study. Secondary aims of this study include further characterization of the
clinical aspects of disease and to establish a contact registry for these patients, in order
to facilitate future studies.
patients with pulmonary Langerhans cell histiocytosis (PLCH). The study will enroll patients
through the clinic network at Rare Lung Disease Consortium (RLDC) and through the
Histiocytosis Association website. Patients will have access to the questionnaire via REDCap
(an online data management system) and each patient will be provided with a link to complete
the survey. The investigators plan on enrolling approximately 200 patients with PLCH for the
purpose of this study. Secondary aims of this study include further characterization of the
clinical aspects of disease and to establish a contact registry for these patients, in order
to facilitate future studies.
The study will enroll participants through the clinic network at the Rare Lung Disease
Consortium (RLDC) and through the Histiocytosis Association websites. Participants will have
access to the questionnaire via REDCap (an online data management system) and each
participant will be provided a link to complete the survey. In case of lack of internet
access or inability to complete the online questionnaire, a paper survey will be mailed out
with a pre-paid envelope to return the survey.
Primary Study Objective(s):
To define the risk of pneumothorax associated with air travel in patients with PLCH.
Secondary Study Objective(s):
To establish a contact registry for patients with PLCH to facilitate future trials To assess
the rate of pneumothorax recurrence in patients with PLCH To assess the efficacy of
pleurodesis in preventing recurrent pneumothoraces among patients with PLCH
Consortium (RLDC) and through the Histiocytosis Association websites. Participants will have
access to the questionnaire via REDCap (an online data management system) and each
participant will be provided a link to complete the survey. In case of lack of internet
access or inability to complete the online questionnaire, a paper survey will be mailed out
with a pre-paid envelope to return the survey.
Primary Study Objective(s):
To define the risk of pneumothorax associated with air travel in patients with PLCH.
Secondary Study Objective(s):
To establish a contact registry for patients with PLCH to facilitate future trials To assess
the rate of pneumothorax recurrence in patients with PLCH To assess the efficacy of
pleurodesis in preventing recurrent pneumothoraces among patients with PLCH
Inclusion Criteria:
- Adult, age 18 or older
- English literate
- Signed, dated informed consent; either given electronically or via paper form
- Confirmed diagnosis of PLCH based either on characteristic radiologic findings, or
histopathological confirmation
Exclusion Criteria:
- Inability, or refusal, to sign informed consent.
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