Research Structure
While delivering optimal patient care is the foremost goal of all
multidisciplinary clinics, VA-MDCs also offer an ideal framework to
create and apply new knowledge that improves patient outcomes. A VA-MDC
provides a structure to conduct clinical trials, quality improvement
projects, and conduct longer-term observational studies. The structure
of the VA-MDC can allow for research participant identification,
collection of biologic samples, molecular testing to explore prognostic
factors, and application of molecular targeted
therapies.23,24 A VA-MDC is perfectly positioned to
bridge the research laboratory knowledge with clinical and translational
research. Research capabilities should be incorporated at the inception
of the program. It is important to assess the research landscape of your
institution and form partnerships in order to utilize the existing
resources and research infrastructure. For example, the VA-MDC may be
able to utilize an existing pediatric cancer center solid tumor
biorepository for banking pathologic specimens. Such a biorepository can
help facilitate identification of new genetic abnormalities in vascular
anomalies, probe the molecular mechanisms involved in vascular
morphogenesis/growth/development, and allow genotype-phenotype
correlation studies and other translational studies. Having tissue
available for research will allow for future research involvement that
has the potential to revolutionize the field vascular anomalies. In
addition, setting up a database to collect clinical information on
patients seen in the VA-MDC will assist in future retrospective and
prospective research projects. Platforms such as REDcap® can by utilized
to collect information regarding diagnosis, imaging and lab results,
medication management, procedures and surgeries performed. Other options
to expand the research footprint of a VA-MDC is to consider becoming an
affiliate member of a cooperative group, if available, as this enables a
program to partner with a member institution and participate in all
trials offered through the institution’s cooperative group
affiliation.23,24 Because of the rare nature of these
disorders, a collaboration with clinical and basic scientists at other
institutions may provide an additional opportunity to advance research
in vascular anomalies. Careful attention should be paid to issues of
authorship and grant support at the beginning of any research
collaboration, taking into account the academic and financial
constraints of each contributing party.