0
Commentary |

Rare Lung Disease ResearchRare Lung Disease Research Recruitment: Strategies for Improving Identification and Recruitment of Research Participants

Samir Gupta, MD; Ahmed M. Bayoumi, MD; Marie E. Faughnan, MD
Author and Funding Information

From the Department of Medicine (Drs Gupta, Bayoumi, and Faughnan) and the Department of Health Policy, Management, and Evaluation (Dr Bayoumi), University of Toronto; and the Rare Lung Disease Research Program, Division of Respirology, Department of Medicine, St. Michael’s Hospital (Drs Gupta and Faughnan); The Centre for Research on Inner City Health (Dr Bayoumi), The Keenan Research Centre in the Li Ka Shing Knowledge Institute of St. Michael’s Hospital (Drs Bayoumi, Gupta, and Faughnan); and the Division of General Internal Medicine (Dr Bayoumi), St. Michael’s Hospital, Toronto, ON, Canada.

Correspondence to: Samir Gupta, MD, Ste 6045, Bond Wing, 30 Bond St, Toronto, ON, M5B 1W8, Canada; e-mail: guptas@smh.ca


Funding/Support: Drs Gupta, Faughnan, and Bayoumi are supported by the The Keenan Research Centre in the Li Ka Shing Knowledge Institute of St. Michael’s Hospital. Dr Bayoumi holds a chair in Applied Health Services Research from the Canadian Institutes of Health Research and the Ontario Ministry of Health and Long-Term Care. Dr Faughnan is also supported by the Nelson Arthur Hyland Foundation.

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians (http://www.chestpubs.org/site/misc/reprints.xhtml).


© 2011 American College of Chest Physicians


Chest. 2011;140(5):1123-1129. doi:10.1378/chest.11-1094
Text Size: A A A
Published online

Research in rare lung diseases faces methodologic limitations by virtue of the small number of participants available to be studied. We explored several strategies that may improve researchers’ ability to identify and recruit research participants with rare lung diseases. We provide an overview of strategies based on available evidence, previously used approaches, and reasoning. First, disease detection is generally poor and may be improved through strategies targeted at primary care practitioners or directly at patients, thus increasing the pool of patients available for research studies. Next, standardization of case definitions in rare lung diseases is often lacking, hindering research recruitment efforts because of confusion over appropriate recruitment criteria. Expert consensus statements can enhance both clinical care and research recruitment by standardizing definitions. Finally, recruitment strategies using rare lung disease registries, clinical research networks, novel Internet-based direct patient recruitment approaches, and patient organizations may facilitate recruitment of patients with rare lung diseases. In summary, although several strategies for improving the identification and recruitment of research participants with rare lung diseases have been proposed, published examples are few. Objective measurement and reporting of novel recruitment methods and collaboration among researchers facing the same limitations across various rare lung diseases are required. Advancements in this area are vital to the design and performance of much-needed robust clinical studies across the spectrum of rare lung diseases.


Sign In to Access Full Content

MEMBER & INDIVIDUAL SUBSCRIBER

Want Access?

NEW TO CHEST?

Become a CHEST member and receive a FREE subscription as a benefit of membership.

Individuals can purchase this article on ScienceDirect.

Individuals can purchase a subscription to the journal.

Individuals can purchase a subscription to the journal or buy individual articles.

Learn more about membership or Purchase a Full Subscription.

INSTITUTIONAL ACCESS

Institutional access is now available through ScienceDirect and can be purchased at myelsevier.com.

Sign In to Access Full Content

MEMBER & INDIVIDUAL SUBSCRIBER

Want Access?

NEW TO CHEST?

Become a CHEST member and receive a FREE subscription as a benefit of membership.

Individuals can purchase this article on ScienceDirect.

Individuals can purchase a subscription to the journal.

Individuals can purchase a subscription to the journal or buy individual articles.

Learn more about membership or Purchase a Full Subscription.

INSTITUTIONAL ACCESS

Institutional access is now available through ScienceDirect and can be purchased at myelsevier.com.

Figures

Tables

References

NOTE:
Citing articles are presented as examples only. In non-demo SCM6 implementation, integration with CrossRef’s "Cited By" API will populate this tab (http://www.crossref.org/citedby.html).

Some tools below are only available to our subscribers or users with an online account.

Sign In to Access Full Content

MEMBER & INDIVIDUAL SUBSCRIBER

Want Access?

NEW TO CHEST?

Become a CHEST member and receive a FREE subscription as a benefit of membership.

Individuals can purchase this article on ScienceDirect.

Individuals can purchase a subscription to the journal.

Individuals can purchase a subscription to the journal or buy individual articles.

Learn more about membership or Purchase a Full Subscription.

INSTITUTIONAL ACCESS

Institutional access is now available through ScienceDirect and can be purchased at myelsevier.com.

Related Content

Customize your page view by dragging & repositioning the boxes below.

Find Similar Articles
CHEST Journal Articles
PubMed Articles
Guidelines
Infant/toddler pulmonary function tests-2008 revision & update.
American Association for Respiratory Care | 4/3/2009
Removal of the endotracheal tube—2007 revision & update.
American Association for Respiratory Care | 8/17/2007
  • CHEST Journal
    Print ISSN: 0012-3692
    Online ISSN: 1931-3543