The OVAMA project
The mission of the OVAMA (Outcome measures for VAscular MAlformations) project is to uniform outcome reporting in clinical research on peripheral vascular malformations.
Without harmonization of outcome measures, treatments cannot be properly compared. This hampers the development of evidence-based treatment guidelines, which are urgently needed for these challenging congenital conditions.
What to measure?
To evaluate treatment efficacy, the first step was deciding on what to measure. We developed a core domain set (CDS) for peripheral vascular malformations. A CDS is a minimum set of outcome domains that should be measured when evaluating treatment outcomes in health conditions. This international consensus project, involving 167 physician and 134 patient/parent contributors, consisted of a three-round e-Delphi study and 2 consensus meetings.
How to measure?
Outcome measurement instruments
The next step towards uniform outcome reporting was determining how to measure these core domains, i.e. developing a core outcome measurement set (COMS). This project, involved an appraisal of available instruments and development of a new disease-specific instrument: the OVAMA questionnaire.
The OVAMA steering group
The OVAMA project is an initiative from the Amsterdam University Medical Centers and is led by an international steering group. The current team:
- Max M. Lokhorst (Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, The Netherlands)
- Sophie E.R. Horbach (Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, The Netherlands)
- Chantal M.A.M. van der Horst (Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, The Netherlands)
- Phyllis I. Spuls (Department of Dermatology, Amsterdam University Medical Centers; Amsterdam Public Health, Infection and Immunity, The Netherlands)
- Francine Blei (Hemangioma and Vascular/Lymphatic Malformations Program, Hassenfeld Children’s Hospital at NYU Langone, New York, USA)
- Carine J.M. van der Vleuten (Department of Dermatology, Radboud University Medical Center, Nijmegen, The Netherlands)
- Ilona J. Frieden (Department of Dermatology, University of California San Francisco, San Francisco, USA)
- Gresham T. Richter (Department of Otolaryngology, University of Arkansas for Medical Sciences, Arkansas Children’s Hospital, Arkansas, USA)
- Swee T. Tan (Wellington Regional Plastic, Maxillofacial and Burns Unit, Hutt Hospital, and Gillies McIndoe Research Institute, Wellington, New Zealand)
- Tobian Muir (Department of Plastic and Reconstructive Surgery, James Cook University Hospital, Middlesbrough, UK)
- Tony (A.J.) Penington (Department of Pediatrics, University of Melbourne and Murdoch Children’s Research Institute, Melbourne, Australia)
- Laurence M. Boon (Center for Vascular Anomalies, Division of Plastic and Reconstructive Surgery, Cliniques Universitaires Saint-Luc, and Human Molecular Genetics, de Duve Institute, Université catholique de Louvain, Brussels Brussel, Belgium; VASCERN VASCA European Reference Centre, Brussels, Belgium)