LAM Summits
This Brighton Summit focused on further accelerating the growth, development and effectiveness of the LAM/TSC community coordination worldwide. In Brighton, the LAM Treatment Alliance worked closely with our Tuberous Sclerosis Alliance and Tuberous Sclerosis International partners to strategically address new forms of global patient-researcher collaboration and coordination of clinical trials. Through focused workshops, patients, patient family members, researchers and clinicians shaped new initiatives along with the direction of tissue and data-sharing efforts already underway, specifically as they relate to those launched at the LAM Global Patient Summit held in Oxford, UK this past January. These initiatives included the internationalization of LAM tissue donation, procurement and distribution program and LAMsight, an internet-based data-sharing platform enabling patients and researchers to collaborate in search of a cure far more quickly than has heretofore been possible. These meetings were streamed live via the Internet for remote global participation to ensure that our feedback process and global initiatives were maximally inclusive across countries, institutions and LAM/TSC organizations.
The LTA has been working to build networks that support research globally so that every country and every LAM organization can be maximally involved in the search for treatment. This meeting focused on concrete steps to ensure that patient coordination is useful to making research progress in the fastest time possible. Patient representatives from LAM organizations from 17 countries where LAM patients are known attended, as well as researchers and drug company partners. Sessions addressed ways that patients can support treatment research through tissue procurement efforts and via global patient-researcher database developed by LTA MIT Media Lab partnership where patient participation is crucial. We also provided updates on clinical trials underway or in the pipeline and discussed ways for LAM patients to coordinate with researchers and drug companies seeking candidates for a drug trials.
The LTA Global LAM Patient Summit achieved international agreement to start work immediately with NDRI to coordinate a worldwide LAM tissue donation and researcher access and distribution program. Representatives also agreed to pursue the LAMSight project, a collaboration between the LAM Treatment Alliance, MIT Media Lab, Dana-Farber Cancer Institute and other partners, which uses cutting-edge media technologies to create a global research network of patients with the disease and researchers working to effectively treat it; a critical step towards research progress. LAMsight will be in beta-testing for the next few months.
LAM Treatment Alliance
E-mail: info@lamtreatmentalliance.org
Address: 64 Church Street, 2nd floor; Cambridge, MA 02138; USA
Phone: +1 (617) 460-7339
Fax: +1 (617) 864-0614
Sponsors, Partners and Supporters
Harvard Medical SchoolDepartment of Continuing Education
Brigham and Women's Hospital
Dana-Farber Cancer Institute
National Heart Lung and Blood Institute
MassachusettsGeneral Hospital
National Disease Research Interchange
Foley Hoag
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