Integrating Clinical Data

Cooperation is the watchword for clinical research conducted by several research groups in North America. Now is the time to extend the reach globally; to integrate clinical research efforts and data from investigators in Europe, South America, Asia, Australia and elsewhere.

• To make progress against this lethal disease, we must first join together in collection of data. Common protocols for clinical studies and an integrated electronic database will allow investigators to compare and contrast clinical findings, search for commonalities and differences, maximize knowledge, and identify potential avenues for further exploration. The Huntington Project is working to develop these systems.

• Key data to be included in this database will be family history information. Integration of pedigree information with clinical data, including response to treatment, will help researchers identify genetic influences and promising therapies.

• Information of enormous potential can also be gleaned from the collection of biological samples, such as blood and its DNA, RNA, and protein constituents. A biological specimen repository, linked to the database, will allow researchers in the future to take advantage of the contributions made by research participants today.

• The process of informed consent, and protecting the privacy and confidentiality of all research participants and family members is of central importance in the collection of data. All protocols being developed will fully comply with laws and regulations designed to protect privacy, even as we strive to collect the most informative data possible.