Clinical and Translational Resources

Several clinical and translational resources are available in the study of neurological disease such as genetic and family data.

Parkinson's Disease Data and Organizing Center
The National Research Roster for Huntington Disease Patients and Families
Repository for Molecular Brain Neoplasia Data (REMBRANDT)

Parkinson’s Disease Data and Organizing Center

The University of Rochester Medical Center has been chosen as home to the new Parkinson's Disease Data and Organizing Center (PD-DOC). The new center will pool and manage the data from 15 existing Parkinson's disease centers funded by NIH and eventually aims to include information from all the clinical studies of Parkinson's that the NIH or other federal agencies fund. The new center will help doctors around the country work together to take advantage of the efforts of thousands of researchers and patients who are seeking new ways to diagnose, treat, and prevent Parkinson's disease. The team plans to create a shared database that will make it easier for researchers to combine and compare results and spot trends that would benefit patients. Such a large body of data will be useful in the discovery of potential 'biomarkers' to help track the progression of the disease. In addition the database will help in the identification of various genetic mutations that contribute to the disease. Finally PD-DOC will be instrumental in helping to characterize how a patient's symptoms and brain change as the patient's illness advances and in the development of standard of PD rating scales.

Related Sites:
NIH Neuroscience Blueprint

Contact:
Dr. Wendy Galpern MD., Ph.D., Program Director, NINDS

The National Research Roster for Huntington Disease Patients and Families

The National Research Roster for Huntington Disease is a unique nationwide information resource dedicated to assisting scientific research on Huntington disease.

The National Research Roster for Huntington Disease is a unique nationwide information resource dedicated to assisting scientific research on Huntington disease. The National Research Roster for Huntington Disease Patients and Families was established in 1979 at Indiana University in response to a recommendation from the Commission for the Control of Huntington's Disease and its Consequences. The Roster data is completely confidential and contains computerized information on the names of families, the history of HD in the family and other related data. The goal of the Roster is to serve as a link between patients and families interested in participating in research and scientists interested in studying this disorder. The Roster works to unite patient and scientist in order to encourage successful research studies which may lead to new treatments and an eventual cure.

Related Sites:
National Research Roster for Huntington Disease Patients & Families
NIH Neuroscience Blueprint

Contact:
Dr. Margaret Sutherland, Ph.D., NINDS

Repository for Molecular Brain Neoplasia Data (REMBRANDT)

The goal of the REMBRANDT web portal is to empower translational research for brain tumor studies. REMBRANDT is a joint NCI-NINDS initiative that hosts diverse types of molecular research and clinical trials data related to brain cancers, including gliomas, along with a wide variety of web-based analysis tools that readily facilitate the understanding of critical correlations among the different data types.

The aim of REMBRANDT is to be the access portal for a national molecular, genetic, and clinical database of several thousand primary brain tumors that is fully open and accessible to all investigators (including intramural and extramural researchers), as well as the public-at-large. The data can be downloaded as raw files containing all the information gathered through the primary experiments or can be mined using the informatics support provided. This comprehensive brain tumor data portal will allow for easy ad hoc querying across multiple domains, thus allowing physician-scientists to make the right decisions during patient treatments.

The main focus of REMBRANDT is to molecularly characterize a large number of adult and pediatric primary brain tumors and to correlate those data with extensive retrospective and prospective clinical data. Specific data types hosted here are gene expression profiles, real time PCR assays, CGH and SNP array information, sequencing data, tissue array results and images, proteomic profiles, and patients responses to various treatments. Notably, the genetic/molecular analyses in REMBRANDT are on somatic tissues (tumors) not germline specimens. Clinical trials information and protocols are also accessible.

Related Sites
REMBRANDT Web Portal
REMBRANDT Information site

Contact:
Subhashree Madhavan, Program Director, NCI