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US and International Studies Seeking Participants

 

US Studies


Office of Rare Disease:
Brain Vascular Malformation Consortium
MRI Study at the University of New Mexico

Objectives of the Study: 

To use medical history, magnetic resonance imaging, and DNA analysis to determine the factors that influence Cavernous Angioma disease severity.

Inclusion Criteria:

- has been diagnosed with CCM or is a family member at risk for inheritance of CCM

-age 7 or older

- willing to comply with study requirements (blood draws, detailed medical exam and history, MRI)

- all of which will take place at UNM in Albuquerque

- able to pass MRI safety screening (e.g. not pregnant, not claustrophobic, no metal implants)

- willing/able to participate in study for 5 years (study visits and phone calls)

Contact Information:

Interested persons should contact:

Beth Baca, Study Coordinator

Leslie Morrison, Principal Investigator

(Tel) 505.272.3194 or 505.272.3342

email: BABaca@salud.unm.edu

          lmorrison@salud.unm.edu

 

This study is conducted as part of the Rare Disease Clinical Reserach Network.  A contact registry speciifc for this study is  available for registration.  This registry will provide study-related communication to eligible participatns.  This registry is discinct from the International Cavernous Angioma Patient Registry (www.angioma.org/registry), and indifviduals may register for both programs.  For more information or to register for the contact registry for this study click HERE.

 


University of New Mexico Skin Lesion Study

 

Researchers at the New Mexico Dermatology Department are currently recruiting subjects for a study on Cerebral Cavernous Malformations (CCM) and the patients who carry the “Common Hispanic” genetic mutation for this disease.  For this study we are looking for individuals who are genetically proven to carry the mutation for CCM and who also have blood vessel malformations in their skin. 

 

Objectives of the Study: 

 

We are taking small biopsies of the blood vessel malformations in the skin, and studying whether these malformations are related to the genetic mutation and if so in what way.  This will help us in our study and understanding of this disease and help us to determine appropriate treatments for individuals suffering from this disease and hopefully contribute to an eventual cure.

Inclusion Criteria:

- Participants must be proven to carry the CCM mutation through genetic testing

 

- Participants must have a blood vessel malformation in their skin that can be biopsied

 

- Participants must be 18 years of age or older

 

- Participants must be able to travel to the University of New Mexico Dermatology clinic in Albuquerque New Mexico

 

If you or one of your patients meets these criteria and is interested in participating in this study please contact:

 

Dr. Barrett Zlotoff –bzlotoff@salud.unm.edu

 

505-272-6000

  Or

Dr. Colin Buckley - colin.buckley@lifebioscience.com

 


University of Massachusetts Medical Center MRI Study

Objectives of the Study:

To utilize the sensitivity of 3T Magnetic Resonance Diffusion Tensor Imaging to:

1. Determine the effects of Cavernous Malformation (Cavernous Angioma, Cavernoma) lesions on adjacent brain tissue.

2. Determine optimal surgical excision strategies

Inclusion Criteria:

-Cavernous Malformation (Cavernous Angioma, Cavernoma) diagnosis confirmed by MRI.

-Brief questionnaire regarding medical history, both general and specific to Cavernoma.  Preferably patients would be willing to disclose medical records and previous imaging studies by permitting us to copy their records, or authorizing us to obtain records from their physician.

-Ability to participate in MRI study at UMass, University Campus, Worcester, MA.  At this point we are looking for patients to come for a single study which would take approximately 30 minutes.

Contact Information:

Currently we are identifying patients and accumulating patient information.  The actual MRI scanning may not take place until 2010.

Interested persons should contact:

Keith Cauley, MD PhD

keithcauley@hotmail.com

 

International Studies 


United Kingdom

Scottish Audit of Intracranial Vascular Malformations (SAIVMs)
The purpose of the Scottish Audit of Intracranial Vascular Malformations (SAIVMs) is to monitor the quality of care, treatment, and outcomes for adults with vascular malformations of the brain, in order to improve the care and services we provide. SAIVMs does this by trying to find every adult resident in Scotland, who is newly diagnosed with one of the malformations above, and enrolling them in a confidential audit. SAIVMs aims to include every adult in order to get a truly representative picture of what happens to people with your condition in Scotland. We are looking for people who were first diagnosed in the years 1999-2003, and 2006 onwards. Contact information: 

SAIVMs

Bramwell Dott Building
Department of Clinical Neurosciences
Western General Hospital
Edinburgh EH4 2XU 

Tel/fax: 0131 537 2944
Email: Lothian.SAIVMs@nhs.net
Web: www.saivms.scot.nhs.uk

For more information, please see the brochure.


Brazil
 
Grupo de Investigação do Projeto:


HUCFF / UFRJ
Jorge Marcondes de Souza

Tel / Fax: 5521-25622826
Address:  Serviço de Neurocirurgia HUCFF
              Av Brigadeiro Trompowsky, s/ nº
              Cidade Universitária – Ilha do Fundão RJ
E-mail: jmarcondes@hucff.ufrj.br


France

UFR Médicale Lariboisière Saint Louis

Mme Pr Elisabeth Tournier-Lasserve
Libellé du laboratoire ou service
INSERM E 365 - Génétique des maladies vasculaires

Adresse:
Génétique des maladies vasculaires
Faculté de Médecine Lariboisière
10 Avenue de Verdun
75010 PARIS
FRANCE

Téléphone: 01 44 89 77 50
Fax: 01 44 89 77 55
Email: tournier@necker.fr

 

 

Webpage updated 12.31.09