Vascular Low Frequency Disease Consortium

The VLFDC is a collaborative effort among investigators from institutions across the US and the world to study management and outcomes of uncommon vascular conditions. The collaborative effort allows for a large enough sample size to provide sufficient power for drawing meaningful conclusions that would otherwise be difficult to make with the small numbers of patients treated at any individual institution.

To date, the VLFDC has involved over 75 institutions and 135 investigators in the United States and overseas, and each completed project has resulted in presentations at national conferences and publications in high impact, peer-reviewed journals.

Projects in Progress

• Contemporary Diagnosis and Management of Aortic Graft Infection
• Pediatric Mid-Aortic Syndrome (MAS)
• Venous Aneurysms
• Leiomyosarcoma of the Inferior Vena Cava

Completed Projects

To Start a VLFDC Project:

Project Proposal

Sample Invitation Letter

Sample Study Protocol

REDCap - Data Collection Website

Sample Data Entry Manual

1. Identify a low frequency vascular disease. This may originate in your practice, from reading the literature, etc.
2. Perform a comprehensive literature review to confirm that a VLFDC study of the disease will contribute significantly to the literature. The ideal diseases for VLFDC are those where previous studies include small sample sizes from single institutions, no large multi-institutional study exists and discrepancies in treatment recommendations exist among studies. No VQI data.
3. Draft a Project Proposal following the format used in the form above. 
4. Contact the VLFDC team to discuss the project. Project proposals are reviewed quarterly, (January 31^st, April 30^th, July 31^st and October 31^st) by the Steering Committee.     
5. Once proposal is accepted, develop a list of variables to be collected. Consider the variables reported by the studies identified in the literature search.  (Do not include protected health information, including date of birth, date of surgery, etc., for an expedited IRB review)
6. Beta test data collection on one of your patients. Ideally, the data collection should require approximately 10-20 minutes per patient.
7. Refine the data collection and perform a single institution study at your own institution.
8. Further refine the data collection based on findings from the single institution study.
9. Invite VLFDC collaborators to participate in the multi-institutional study (VLFDC team to assist)
10. Collaborators who agree to participate will receive the protocol, and data collection manual (VLFDC team to assist)
11. All information will be entered onto REDCap, a HIPAA compliant website.

Obligations of a VLFDC Investigator:

The UCLA VLFDC team will partner with all VLFDC Investigators on any projects that are executed using the VLFDC platform. The VLFDC investigator who proposes the project idea, analyzes the data and writes the abstract will be given the first choice to present the multi-institutional abstract at a national meeting. All investigators on a given project will be offered authorship on the manuscript in accordance with author requirements stipulated by the journal. The UCLA VLFDC team will maintain the central repository of all VLFDC related materials for all projects, to include the dataset, data dictionary, protocol, posters, PowerPoint presentations, abstracts and manuscripts. Any abstract or manuscript resulting from data collected through the VLFDC platform will be circulated to all investigators in a timely fashion prior to submission deadlines so that all investigators have the opportunity to give feedback.

UCLA VLFDC Team

Peter F Lawrence, MD | Director

Karen Woo, MD | Associate Director

Donald Baril, MD | Associate Director

Gabriela Flores | Program Coordinator

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