The International Cavernous Angioma Patient Registry

About Us

You can edit this page to include any information you like about your organization, the history, and advisors.  The following is an example used by CureCMD:

History

In 2008, leaders in the congenital muscular dystrophy (CMD) community began discussing the need for a new kind of resource that would connect and serve the needs of the entire CMD community. What they envisioned was a central hub that would bring together those living with the disease, along with their families, friends and caregivers, to connect them with medical research, clinical care, clinical trials and each other.

At the same time, it would be a resource for industries with an interest in CMD, allowing limited access to a database of information provided by patients and their families—information that could prove vital to advances in care and treatment. This resource would help connect these stakeholders, while providing them with resources never before available in one place.  Today, the result of this endeavour is the CMDIR, a robust and cutting-edge website and registry.

Who We Are

The CMDIR is the only global registry for Congenital Muscular Dystrophy (CMD) with one goal, to achieve global registration of the CMD community. The CMDIR is a central hub for up to date information regarding CMD clinical studies and trials. Through the CMDIR, the CMD community has a home- a place to register with and without genetic confirmation of disease and a means by which to be contacted for clinical news.

The organizers of the CMDIR come from leaders in the non-profit sector and academic institutions. Regardless of their individual backgrounds, the CMDIR thought leaders share a common goal to increase the community’s ability to help one another through improved communication, and by doing so, to help those affected by congenital muscular dystrophy (CMD).

The information provided on the CMDIR has been developed with the review, direction and advice from a group of experts in congenital muscular dystrophy. Advisors contribute to CMDIR in many areas including reviewing educational materials, providing programmatic direction, advising on processes and procedures, and facilitating opportunities for outreach and collaboration.

The operations team behind this incredible resource continues to refine and perfect the site so that it evolves to best serve the needs of the entire community.  We are open to your suggestions and feedback.

CMDIR Organizers and Partners

  • Cure CMD, www.curecmd.org  
  • TREAT-NMD, www.treat-nmd.eu
  • S.A.M. (Struggle Against Muscular Dystrophy), www.helpsam.org
  • Innolyst, Inc.
  • Emory University, Department of Human Genetics

CMDIR Operations Team

  • Ami Mehta, MS, CGC, Department of Human Genetics, Emory University, Atlanta, Georgia
  • Kyle Brown, CEO, Innolyst, Inc., CA
  • Anne Rutkowski, MD, Chairman Cure CMD

CMDIR Advisory Board

  • Carsten Bonnemann, MD, PhD, Childrens Hospital of Philadelphia, Pennsylvania
  • Madhuri Hegde, PhD, Department of Human Genetics, Emory University, Atlanta, Georgia
  • Susan Sparks, MD, PhD, Carolinas Medical Center, North Carolina
  • Vanessa Rangel Miller, MS, CGC, Department of Human Genetics, Emory University, Atlanta, Georgia
  • Jiri Vajsar, MD, Hospital for Sick Kids, Toronto, Canada