Amyotrophic lateral sclerosis-parkinsonism/dementia complex 1
Other Names for this Disease
- Amyotrophic lateral sclerosis, Parkinsonism/Dementia complex of Guam
- Guam disease
Novel Molecular Mechanisms of Neuromuscular Disease: Implications for Therapy, Monday, September 16, 2013 - Wednesday, September 18, 2013
Location: Oxford, England
Description: This conference will bring new collaborative opportunities and substantive scientific information to neuromuscular investigators. It will provide senior investigators, NIH program staff, and patient advocacy group/foundation representatives opportunities to meet with junior/trainee investigators who are in the process of developing careers in clinical/translational investigation. Trainees will interact with leaders in the field as they discuss innovative methodology designed to meet the challenges of studies of uncommon diseases and provide perspective on clinical studies in various phases of development. Younger investigators will be profiled during a hot topics session. Furthermore, the poster sessions, the discussions after each session, the meals and other informal settings offer them a chance to question and to present their own ideas.
RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
Translational Neuromuscular Research, Diverse Diseases, Convergent Themes, Monday, September 19, 2011 - Wednesday, September 21, 2011
Location: Beaver Hollow Conference Center, Java Center, NY
Description: The infrastructure for this conference was developed by the MSG, whose investigators have worked for the past 10 years to secure extramural funding and to develop outcome measures for clinical research/experimental muscle and other neuromuscular diseases. The goal of this conference is to help identify commonalities across therapy development in neuromuscular disease to help ensure that lessons learned in any one disease are disseminated across the neuromuscular community.
NIH ALS Conference: Clinical Research to Find the Pathogenesis and Cause of ALS, Wednesday, September 07, 2011 - Friday, September 09, 2011
Location: Tarrytown House Estate and Conference Center, Tarrytown, NY
Description: This conference is designed to stimulate the development of collaborative research projects between amyotrophic lateral sclerosis (ALS) physicians and basic scientists. It is expected that conference participants will develop a consensus regarding current research gaps and recommended next steps to enhance patient-oriented research in ALS. The previous “Tarrytown 1” conference, which was held in 2003, resulted in the formation of a new ALS research group that facilitated the biobanking of ALS biospecimens. It is expected that the 2011 conference will have similar tangible results.
Third Genome Dynamics in the Neurosciences Conference, Sunday, July 18, 2010 - Thursday, July 22, 2010
Location: The Hilton Metropole, Brighton, England
Description: The goal of this meeting was to integrate basic processes of DNA damage signaling and repair and clinical aspects of neurological and neurodegenerative disease. The program was designed to bring together leading scientists with primary interests in DNA damage signaling with those working in specific related neurodegenerative disease areas as a means for integrating these fields. It was anticipated that this would generate insights into how normal processes of genome maintenance in the brain contribute to the prevention of a wide range of diseases.
Third NIH Workshop on Gaucher Disease and Parkinsonism, Thursday, April 08, 2010 - Friday, April 09, 2010
Location: NIH- the Cloister, Bethesda, Maryland
Description: Workshop goals were to (1) determine the appropriate human, animal, or cell-based models to better understand this correlation; (2) explore the mechanisms and/or pathways involved; and (3) establish international collaborations to enhance progress in the field and to make recommendations for future study.
VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , Thursday, March 18, 2010 - Saturday, March 20, 2010
Location: Palais Rouge Convention Center, Palermo, Buenos Aires, Argentina
Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
FTD Workshop to Develop CDEs and Pathology Data Elements for Future Clinical Studies, Tuesday, February 02, 2010 - Wednesday, February 03, 2010
Location: Miami, Florida
Description: The goals of the workshop were to (1) establish a protocol for standardized collection of first and serial neurological and neuropsychological data on FTD patients within the interested ADCs; (2) establish FTD-specific pathology data elements and determine whether the ADC pathology protocol addresses these elements or modification is needed for a FTD-specific pathology module; (3) develop a plan to integrate FTD data into the NACC data structure and allow linkage to other ADCs; (4) develop a mechanism to roll out a new data plan within the ADC community; and (5) form a clinical task force for FTD to monitor collection of standardized data.