How to Request Samples from Enroll-HD

Data sharing and open access are essential to finding treatments for Huntington’s disease. Enroll-HD is set up so that coded clinical data and renewable biospecimens from the study are widely available to the global research community. The data is open access in order to energize HD research and encourage a broad variety of ideas and projects.

Researchers requesting samples will be asked to sign agreements governing access to the samples and spelling out conditions of use and publication, including requirements to uphold privacy and to share results. The agreement prohibits the transfer of samples.

Requests will be reviewed by the Enroll-HD Operations Committee and Scientific Publication Review Committee, and approval for renewable samples will be granted solely on the basis of researcher qualifications. Renewable biosamples include DNA and immortalized lymphoblastoid cell lines.

Nonrenewable samples: Buffy coat is also available, but as a non-renewable biosample. These requests require further review by the Scientific/Publication Review Committee to ensure that the samples will be used for well-designed and scientifically valid projects. Funding must be planned or secured before making the application, and the researcher must obtain ethics committee approval where required.

Requirements: Investigators working with all data will be asked to provide brief project summaries, including contact information for the lead researcher, that will be posted on this site to encourage collaboration and reduce redundancy. Researchers are also required to report on progress and share results. For further information, refer to the policy document covering data and biosample access.

How to inquire: A searchable database of available samples is under development. In the meantime, researchers who want to obtain biosamples should submit an inquiry to biosamples@enrollhd.org.