NOVA was recently asked to help a committee of nationally known physicians apply for an NIH grant to host a meeting and workshop entitled Infantile Hemangioma:  Current Knowledge and Future Directions.  A letter of support from the patient advocacy groups was necessary to help convince the review board of the grant application that this type of meeting warranted NIH Funding.  The application was approved and the grant was awarded! The report below is a summary of discussions and presentations held during the meeting.

The Meeting was held at the NIH in Bethesda Maryland April 7-9, 2005.  Karla Hall who wrote the letter of support to the NIH and assisted in the Grant Application was an invited guest at the workshop and Meeting.  The meeting was initiated by the Hemangioma Investigator Group.  This international group of physicians included Dr. Eutalia Baselga, Dr. Sarah Chamlin, Dr. Beth Drolet, Dr. Nancy Esterly, Dr. Ilona Frieden, Dr. Maria Garzon, Dr. Anita Haggstrom, Dr. Kimberly Horii, Dr. Anne Lucky, Dr. Denise Metry, Dr. Anthony Mancini, Dr. Brandon Newell and Dr. Amy Noper.  From this group a multidisciplinary committee was formed as the Workshop Organizing Committee to coordinate the meeting.  Dr. Fran Blei, Dr. Beth Drolet, Dr. Steven Fishman, Dr. Ilona Frieden, Dr. Anita Haggstrom, Dr. John Mulliken, Dr. Paula North and Dr. Miikka Vikkula were responsible for the workshop.

     The meeting was intended to provide a forum for the cross fertilization of ideas between the basic and clinical sciences.  Organizers designed the meeting  to develop research agendas that will inspire basic scientific research aimed at advancing the understanding of hemangioma biology and to develop more targeted therapies.  Small group sessions were designed for the development of protocols for the high risk hemangioma

     The meeting commenced with a Keynote address from the award winning Dr. Judah Folkman.  Dr. Folkman addressed the history of the study of angiogenisis, blood vessel development and which led to advances in anti-angiogenic agents to stop blood vessel development in solid tumors.  This work was later applied to hemangioma management and in the 1990's the use of Interferon alpha 2a was introduced.  Unfortunately the interferon drugs had an incidence of neurotoxic side effects in infants and its use today has been significantly reduced.  Other anti-angiogenic agents have been developed and today physicians are carefully monitoring the use of Vincristine in it's application for treating endangering hemangioma. 

On Friday the workshop continued with a series of presentations on a variety of topics, bringing together information collected from a large research survey conducted by the Hemangioma Investigator Group.  The survey collected from 1056 patients from 9 US medical institutions and one group from Barcelona Spain was designed examine the demographics, incidence, presentation and treatment modalities of patients with infantile hemangioma.  Dr. Beth Drolet, Medical College of Wisconsin opened the meeting with a presentation on the incidence, demographics and associations of infantile Hemangioma.  Dr. Ilona Frieden, UC San Francisco presented information on the clinical characteristics of infantile hemangioma and the implications for pathogenesis.  Dr. Maria Garzon, Colombia University, NY gave a remarkable report on the ulceration of infantile hemangioma including data on the incidence, complication,clinical features and treatment options. Dr. Steven Fishman Boston Children's Hospital detailed Hepatic (liver) Hemangioma of infancy, explaining that this type of hemangioma is very different from liver hemangioma diagnosed in adults.  Dr. Milton Waner Beth Israel Hospital, NY presented information on the presentation and treatment of airway hemangioma.  Segmental Hemangioma and Structural Anomalies including the diagnosis of PHACE(S) was presented by Dr. Denise Metry of Texas Children's Hospital.  A clear understanding was established that PHACE (S) is not a true syndrome but rather an association consisting of a hemangioma and at least 1 of the other symptoms.  The degree and severity of the disease varies greatly.  Conference attendees also learned about the patterns of facial segmental hemangiomas and what they mean from Dr. Anita Haggstrom, UC San Francisco.

     The afternoon session opened with presentations from the scientific community.  Understanding of the basic biology involved in infantile hemangioma is the key to developing treatment in the future.  Doug Marchuk, PhD Duke University began the session with information on the genetics of hemangioma.  One of the most interesting points of his presentation was that while specialized maternal cells can cross the placenta they could NOT find evidence of a transfer of endothelial cells from across the placenta.  Dr. Paula North,MD, PhD Arkansas Children's Hospital detailed the histopathology and the molecular phenotype of hemangioma.   Joyce Bischoff, Phd Boston Children's Hospital further detailed the molecular biology of hemangioma evolution and involution.  Matthew Ritter, PhD The Scripps Research Institute, La Jolla, Ca detailed the benefits of using Expression Arrays in identifying molecular regulators of hemangioma growth and involution.    The purpose of his methodology is a larger analysis of gene expression in hemangiomas to identify candidates for further study.

     The treatment of infantile hemangioma series began with a presentation by Amy J. Nopper, MD of University of Missouri-Kansas City.  Dr. Nopper's presentation outlined glucocorticosteroid therapy, the indications for use, the treatment regimens and variability of dose, duration and monitoring for toxicity.  Multiple peer review articles were referenced for her presentation.  Glucocorticosteroids are effective in approximately 80% of the reported cases.  When steroids fail to work the patient may become compromised; Dr. Denise Adams  of Cincinnati Children's Hospital presented information on the other pharmacological treatment options for vascular anomalies.  Dr. Adams detailed the use of interferon in the 1990's and the neurotoxicity which has led to the drug to not be used in children under 1 year of age.  The neurotoxic effects side effects of interferon in infants led to the need for other pharmacological treatment options.  Vincristine is an effective treatment in complicated hemangioma that do not respond to standard therapy, it is an effective alternative is standard therapy presents side effects.  However; prospective clinical trials with increased patient numbers need to be done to further examine the efficacy of this medication. 

     Following the pharmacological presentations Dr. John Mulliken of Boston Children's Hospital presented information on the Surgical Management of Infantile Hemangioma.  His presentation included information on the indications for surgical resection in the proliferative phase, invoulting phase and the involuted phase of a hemangioma development.  Dr. Mulliken shared wonderful photographs of before and after photographs from his clinic outlining techniques for excision and closure as well as guidelines for resections in specific locations of hemangioma presentation.  Dr. Lawrence Eichenfield, MD Children's Hospital UC San Diego presented information on laser therapy for treating hemangioma.  There were many variables presented in assessing the results of laser used to treat hemangioma including variable lasers, timing of treatment, parameters of the laser, (fluence, wavelength, spot, size, cooling hand piece and overlap) as well as varied lesions treated and whether the laser was being used with or without other therapies.  Dr. Eichenfield outlined that a fair assessment of risk and the benefit of the use of laser for the various types of hemangioma with control of the parameters and co-therapy needs to be done.  Dr. Patricia Burrows of Children's Hospital of Boston presented information on the use of Imaging studies in the diagnosis and treatment of hemangioma.  She outlined the use of MR imaging, CT imaging and ultrasound studies and the parameters of these methods.  She also detailed the limitations of these methods.  Dr. Burrows also detailed that where the anomaly was located dictates which type of imaging, when the imaging should be performed and why the specific study should be performed.  Dr. Burrows explained that imaging is not necessary for cutaneous hemangioma with typical clinical appearance and behavior that does not require pharmacological therapy.

     The final presentation was entitled Infantile Hemangioma, Measuring the Burden of the Disease and was presented by Dr. Sarah Chamlin of Children's Memorial Hospital of Chicago, IL.  Dr. Chamlin opened her presentation reading quotations from a Journal of the American Academy of Dermatology 2004 article by t. J. Gleason, which listed remarks parents have reported to be said to them of their child's hemangioma. 

"What did you do in your pregnancy to cause that"

"If this were a hundred years ago you would have left her under a tree to die"

"How disappointed you must be"

Dr. Chamlin reported that comprehensive quality of life effects of hemangiomas on children and their families have not been thoroughly investigated nor are they understood or measured.  These effects can not be ignored.  Using a parental stress index she revealed several issues for parents as well as issues for the child that need to be more carefully examined and evaluated.  Issues included guilt, grief and sadness for the parent which may be projected to the child.  Concerns for self-control, stranger reaction, fears of being different, bullying and the vulnerable child syndrome are all at issue for the child.  Dr. Chamlin will be continuing to look at outcome measures for hemangiomas.

Link to Published Meeeting Proceedings