VASCA Working Group, built upon Multidisciplinary Centres of Excellence for Vascular Anomalies

 

 

 

VASCA-WG is chaired by Pr. Laurence BOON and Pr. Miikka VIKKULA, Centre for Vascular Anomalies (FR / EN), Cliniques Universitaires Saint-Luc, Brussels, Belgium. The VASCA-WG is co-chaired by Pr. Leo J. SCHULTZE KOOL, Radboudumc Expert Center for Hemangioma and Vascular Anomalies (HECOVAN), Nijmegen, Netherlands. VASCA-WG cooperates with the Patient-WG, , whose representative participating to the WG is Caroline VAN DEN BOSCH, HEVAS.

The Centre for Vascular Anomalies, Cliniques Universitaires Saint-Luc, is 25 years old this year 2016, and combines specialists from various disciplines: surgery, genetics, paediatrics, dermatology, radiology, interventional radiology, ENT, etc.

The Centre of Reference is active in ISSVA, the International Society of the Study of Vascular Anomalies, which was based in Belgium until 2015, and is now homed in the USA. We have been in the scientific committee, and the Centre is now in the ISSVA Board.

Vascular anomalies are badly known disorders, and thus patients often run around trying to find a physician who knows their disease. To help them, the Center for Vascular Anomalies have also founded a Patient Association VASCAPA.

We have a major international network with clinicians within the EU and the rest of the world, and have been implicated in the identification of most of the genes for these pathologies: PubMed

We have also ongoing clinical trials, and had a break through with rapamycin last year. Boscolo et al., JCI 2015

For all these and many other reasons, a Network that units the different Multidisciplinary Centers of Reference for Vascular Anomalies in the framework of a broader Network of Centres of Excellence in Rare Multisystemic Vascular Diseases in the EU countries and beyond is extremely important.

This was actually discussed at the Controversies on Vascular Anomalies meeting in May 2015, New York : worldwide, ISSVA should start endorsing Centers for Vascular Anomalies and a network should be created in between them. Thus, the ERN initiative is perfectly timely for us.

The Center for Vascular Anomalies at Cliniques universitaires Saint-Luc in Brussels Belgium (and other HCP members of the VASCA-WG) takes care of a whole variaty of pathologies within the field of Vascular anomalies (see: Wassef et al., Revised classification of Vascular Anomalies, 2015 Pediatrics, and ISSVA web-site).

The Rare Diseases included in this ERN Diseases Working Group are (non exhaustive list):

Bases for the estimated incidence and prevalence numbers: 500 Million inhabitants within European union with about 6 million newborns annually.

sub-thematic areas of expertiseRare or complex disease(s) or condition(s) or highly specialized interventionsCode/ICD/ Orphacode / Group of CodesIncidence (Number of cases / year) (in the EU)Prevalence (in the EU)
VASCARare arteriovenous malformation ORPHA21126612010000
VASCABlue Rubber Bleb Nevus syndrome ORPHA10596500
VASCACapillary malformation-arteriovenous malformation ORPHA137667 12010000
VASCACerebral arteriovenous malformation ORPHA46724
VASCACLAPO syndrome ORPHA168984
VASCACLOVES syndrome ORPHA140944605000
VASCACutis Marmorata Telangiectatica Congenita ORPHA1556121000
VASCADiffuse neonatal hemangiomatosis ORPHA2123
VASCAFacial arteriovenous malformation ORPHA156230
VASCAFamilial cerebral cavernous malformationORPHA22106160050000
VASCADiffuse lymphatic anomaly ORPHA141209
VASCAGlomuvenous malformation ORPHA83454302500
VASCAGorham-Stout syndrome ORPHA736500
VASCAInfantile hemangioma of rare localization ORPHA210589
VASCAKaposiform hemangioendothelioma ORPHA2122
VASCAKlippel-Trénaunay-Weber syndromeORPHA2346605000
VASCALUMBAR association ORPHA83628
VASCARare lymphatic malformation ORPHA241560050000
VASCAMegalencephaly-capillary malformation-polymicrogyria syndromeORPHA60040121000
VASCAMacrocystic lymphatic malformation ORPHA79489
VASCAMaffucci syndrome ORPHA1636346500
VASCAMicrocystic lymphatic malformation ORPHA79490
VASCAMixed cystic lymphatic malformation ORPHA458792
VASCAMucocutaneous venous malformationORPHA2451
VASCANon-involuting congenital hemangioma ORPHA14117920500
VASCAPrimary intralymphatic angioendothelioma ORPHA458768
VASCAParkes-Weber syndromeORPHA90307302500
VASCAPartially-involuting congenital hemangiomaORPHA458785
VASCAPHACE syndromeORPHA42775
VASCAProteus syndrome ORPHA744 6500
VASCAPTEN hamartoma tumor syndrome ORPHA306498 302500
VASCAPulmonary arteriovenous malformation ORPHA2038
VASCARapidly involuting congenital hemangioma ORPHA141184605000
VASCARare capillary malformationORPHA211247 605000
VASCASACRAL associationORPHA2125
VASCASpindle cell hemangioma ORPHA210584
VASCASturge-Weber syndrome ORPHA320512010000
VASCATufted angiomaORPHA10633250
VASCARare venous malformation ORPHA2112521200100000
VASCAVerrucous hemangiomaORPHA464318
All HCP in the VASCA-WG are covering this sub-thematic area of expertise.

In this ERN, there is a specific WG for Pediatric and Primary Lymphedemas.

Hereditary hemorrhagic telangiectasia (HHT, orphanet: 774, ICD‐10: I78.0) is also a vascular anomaly, but for historical reasons specialised centers have been build up for that single diseases on the past. HHT is included as a separate WG within the ERN (see HHT WG).

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BELGIUM

Cliniques universitaires Saint-Luc,  Brussels, Belgium

VASCERN VASCA European Reference Centre, Center for Vascular Anomalies

Chair

Prof. Miikka VIKKULA
Molecular Geneticist

Prof. Laurence M. BOON
Plastic and Microsurgery Surgeon

ePAG Deputy Co-Chair

Maria BAREA

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NETHERLANDS

Radboud university medical center, Nijmegen, Netherlands

VASCERN VASCA European Reference Centre, Expert center for Hemangioma and Vascular Anomalies (Hecovan)

Co-chair

Prof. Leo SCHULTZE KOOL
Interventional Radiologist

Dr. Carine VAN DER VLEUTEN
Dermatologist

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FINLAND

Helsinki University Hospital, Helsinki, Finland

VASCERN VASCA European Reference Centre, Department of Pediatric Surgery

Prof. Päivi SALMINEN
Consultant Pediatric Surgeon

Dr. Kristiina KYRKLUND
Pediatric Surgeon

allemagne

GERMANY

University Medical Center Freiburg, Freiburg, Germany

VASCERN VASCA European Reference Centre, Center of Pediatrics and Adolescent Medicine

Dr. Friedrich KAPP
Pediatrician

Prof. Jochen RÖßLER
Pediatric Hematologist/Oncologist

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IRELAND

Our Lady’s Children’s Hospital Crumlin, Dublin, Ireland

VASCERN VASCA European Reference Centre, Dermatology Department

Prof. Alan IRVINE
Professor of Dermatology

Dr. Veronika DVORAKOVA
Consultant Dermatologist

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ITALY

Bambino Gesù Children’s Hospital, I.R.C.C.S, Rome, Italy

VASCERN VASCA European Reference Centre, Dermatology Department

Dr. Andrea DIOCIAIUTI
Interventional Dermatologist

Dr. May EL HACHEM
Dermatologist

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NETHERLANDS

ePAG Co-Chair

Caroline VAN DEN BOSCH

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SWEDEN

Karolinska University Hospital, Stockholm, Sweden

VASCERN VASCA European Reference Centre, Department of Pediatric Surgery

Dr. Nader GHAFFARPOUR
Pediatric surgeon

Dr. Peder SORENSSON
Pediatric surgeon

 

 

Patient Pathways aim to improve the care and management of patients with a rare disease. They include the “red flags” that may lead to the suspicion of the disease, how to reach a definite diagnosis and the management and follow-up recommendations. They are a very important tool used in defining the best patient care and will be further validated and updated when needed.

 

The first Patient Pathway by the VASCA-WG on Severe/Rare Infantile Hemangioma can be found here

 

 

 

 

German translation here

Italian translation here

Spanish translation here

  1. Wassef M, Blei F, Adams D, Alomari A, Baselga E, Berenstein A, Burrows P, Frieden IJ, Garzon MC, Lopez-Gutierrez JC, Lord DJ, Mitchel S, Powell J, Prendiville J, Vikkula M; ISSVA Board and Scientific Committee. Vascular Anomalies Classification: Recommendations From the International Society for the Study of Vascular Anomalies. Pediatrics. 2015 Jul;136(1):e203-14. doi: 10.1542/peds.2014-3673. Epub 2015 Jun 8. Review.
  2. On the ISSVA web-site, the classification is available with more detailed genetic data: here
  3. Stillo et al. Vascular Anomalies Guidelines by the Italian Society for the Study of Vascular Anomalies (SISAV). Angiology, volume 34. April 2015, Suppl 1 to issue No. 2. (These guidelines will be discussed within the VASCA-WG for further development so as to establish first European guidelines).
  4. A. Elajmi, P. Clapuyt, F. Hammer, A.-C. Bataille, B. Lengele, L.M. Boon. Prise en charge des anomalies vasculaires chez l’enfant. Management of vascular anomalies in children. Annales de chirurgie plastique esthétique (2016). (These guidelines will be discussed within the VASCA-WG for further development so as to establish first European guidelines).

The VASCA-WG will also be working in tight collaboration with ISSVA, which is setting up working groups for establishment of best practice guidelines for various vascular anomalies.

Pills of Knowledge (PoK) are the deliverable for VASCERN Work Package 4 on Pills of Knowledge, defined as short single video lessons (of approximately 3-5 minutes long) in which an expert talks about a specific topic that has been selected and validated by the Rare Disease Working Groups (RDWGs).

Link to the playlist for the VASCA-WG on our YouTube Channel is here

Classification of Vascular Anomalies

Created by Prof. Laurence Boon (Plastic Surgeon, Coordinator of the Center for Vascular Anomalies, Cliniques Universitaires St Luc, Brussels, Belgium).

This Pill of Knowledge (PoK) gives a brief overview of the classification of vascular anomalies. It is intended for the medical community who is not familiar with these anomalies as it introduces the main types of vascular anomalies and their characteristics. Video in English. Subtitles available in 4 European languages.

Diagnostic Approaches for Vascular Anomalies

Created by Dr. Friedrich Kapp (Physician Scientist, University Medical Center, Freiburg, Germany).

This Pill of Knowledge (PoK) talks about the diagnostic approaches for vascular anomalies. The various types of examination and tests involved in reaching an appropriate diagnosis are described. This PoK is a valuable tool for healthcare professionals and patients wanting to learn more about how vascular anomalies are diagnosed. Video in English. Subtitles available in 4 European languages.

Multi-disciplinary Expertise Teams for Vascular Anomalies

Created by Prof. Leo Schultze Kool (Interventional Radiologist, Radboud University Medical Center, Nijmegen, Netherlands).

This Pill of knowledge (PoK) gives a brief summary of why multi-disciplinary expert teams are so necessary for the management and treatment of vascular anomalies. It is intended for the general public. Video in English. Subtitles available in 5 European languages.

Management of Vascular Anomalies

Created by Dr. Kristiina Kyrklund (Pediatric Surgeon, Helsinki University Hospital, Helsinki, Finland)

In this Pill of Knowledge (PoK) Dr. Kristiina Kyrklund gives an introduction on the individualized management of vascular anomalies and how the chosen treatment is based on the characteristic symptoms and location of the anomaly. Suitable for both healthcare professsionals and patients. Video in English. Subtitles available in 4 European languages.

The lymphatic system & lymphatic malformations (Lymfestelsel en lymfatische malformaties) – video in Dutch

This video, produced by the patient organisation HEVAS and validated by the VASCA-WG, talks about the lymphatic system and lymphatic malformations. This video has been made for patients and introduces the patient organisation HEVAS and their work.

View this video here

This video is currently being revised by the VASCA-WG so that an updated English version can be created. Stay tuned for its publication.

Treatments for lymphatic malformations (Behandelingen voor lymfatische malformaties) – video in Dutch

This video, produced by the patient organisation HEVAS and validated by the VASCA-WG, describes the treatments currently available for lymphatic malformations in a clear and understandable manner suited for patients.

View this video here

This video is currently being revised by the VASCA-WG so that an updated English version can be created. Stay tuned for its publication.

 

The PubMed List of 132 VASCA-WG publications from the Working Group Members is provided, and emphasizes the importance of continued clinician education.

VASCA-WG Important References

Vascular Anomalies Classification: Recommendations From the International Society for the Study of Vascular Anomalies.
Wassef M, Blei F, Adams D, Alomari A, Baselga E, Berenstein A, Burrows P, Frieden IJ, Garzon MC, Lopez-Gutierrez JC, Lord DJ, Mitchel S, Powell J, Prendiville J, Vikkula M; ISSVA Board and Scientific Committee.
Pediatrics. 2015 Jul;136(1):e203-14. doi: 10.1542/peds.2014-3673. Epub 2015 Jun 8. Review.

Mulliken & Young’s Vascular Anomalies: Hemangiomas and Malformations, 2nd edition (Book). Editors: Mulliken JB, Burrows PE, Fishman S.
Oxford University Press, New York, 2013, pp 1-1118.

Disorders affecting cutaneous vasculature.
Dompmartin A, Revencu N, Boon LM, Vikkula M.
In: Griffiths et al, Rook’s Textbook of Dermatology, 8th ed, section 5/chapter 73, 2016.

Vascular Anomalies.
Boon LM, Vikkula M.
In : Fitzpatrick’s Dermatology in General Medicine, 8th edition, McGraw-Hill Professional Publishing. Editors: Klaus Wolff, Lowell A. Goldsmith, Stephen I. Katz, Barbara A. Gilchrest, Amy S. Paller, David J. Leffell. 2012, vol 2, section 28, chapter 172, p 2076-2094.

Vascular malformations.
Boon LM, Enjolras O, Mulliken JB, Vikkula M.
In: Harper, Textbook of Pediatric Dermatology, 3ed. Editors: Irvine A, Yan A and Hoeger P, Wiley-Blackwell 2011, vol 1, chapter 112, pp 112.1-112.24.

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