ASPHO VA SIG
Inaugural CaNVAS group assembled
K-T Support Group Represented in first ever CaNVAS Panel
The Consortium of iNvestigators of Vascular AnomalieS (CaNVAS) is a small research group focused on efficiency and ability to complete clinical research studies on vascular anomalies. This consortium sprung from discussions in the pediatric hematology/oncology vascular anomalies special interest group (ASPHO VA SIG). Patient advocates will hold two seats in the consortium. Dr. Denise Adams and Dr. Michael Jeng, Chair and Co-Chair of the Research Committee, ASPHO Vascular SIG, announced today that Mellenee Finger from K-T Support Group and Jack Kelly, President of Lymphagiomatosis and Gorham's Disease Alliance (LGDA) will be on the inaugural panel.
K-T Support Group members have benefitted greatly from our participation with the hematology/oncology group. Their interest and willingness to step forward and take a lead in educating other medical professionals, to search for therapeutic measures to improve the quality of life of vascular anomaly patients, and to follow through with trials brings hope for a whole new future world for members where options exist for managing aspects of these conditions.
ASPHO is a group of over 1800 hematology/oncology professionals. The organization is dedicated solely to the professional development and interest of subspecialists in pediatric hematology/oncology.
ASPHO allows special interest groups (SIGs). SIGs provide forums that allow members with similar interests and challenges to easily interact with each other and develop extended resource bases. ASPHO SIGs are open to participation by any ASPHO members. SIGs will meet annually at the ASPHO annual meeting.
The Special Interest Group that is very helpful to us is the Vascular Anomalies SIG. From the ASPHO website:
The Vascular Anomalies Special Interest Group's (SIG) mission is to improve the care of children and young adults with vascular anomalies through multicenter collaborative research.
The goals of this special interest group include
- current continued education to ASPHO membership in the diagnosis, treatment, and management of patients with vascular anomalies
- multicenter collaboration to establish standards of practice for patients with vascular anomalies
- development of collaborative research projects such as hypotheses-generating initiatives (e.g., registries, retrospective analyses), treatment protocols, and prospective observational and interventional studies
- utilizing our experience developing consortia for rare disease research to create registries to collect natural history and outcomes data, design standards of practice and treatment protocols, and collaborate with scientists to develop biomarkers, animal models, and improved understanding of biology that will hopefully emerge into the development of prospective clinical trials.
K-T Support Group is one of a handful of patient advocate groups who participate in the special interest group. It has given us the rare opportunity to let the patient voice be heard by treating physicians. As the core SIG group grows by educating their fellow members, encouraging learning and mentoring to facilitate the learning process, we are there to provide input from the patient perspective.
We have already seen growth in the number of physicians across the country who are interested and learning about vascular anomalies. We also have input in medical research in several ways. one being the collaboration of patients via blind surveys.
The ASPHO VA SIG meets regularly and communicates frequently between meetings.
Page last updated March 12, 2018