Anonymous statistical data
The following procedures must be completed prior to providing data to the investigator:
Submission of a written request for Roster statistical data, outlining needed data points (this can be done via e-mail)
Once the written request is received, Roster submits request to the HD Scientific Advisory Committee for informational purposes only. Since statistical requests do not require patient contact, approval from the HD Scientific Advisory Committee is not required.
Statistics are compiled and sent to the researcher.
All publications resulting from the provided statistics must cite the Roster. See publication guidelines below.
Identifiable statistical data, or for subject recruitment
The following procedures must be completed prior to providing subject information to the investigator.
A formal, written proposal must be submitted which outlines study design, study purpose, desired outcomes, and method of data collection with complete example provided (e.g. proposed questionnaire, phone screen, etc.) The researcher is responsible for obtaining local IRB approval of the project and forwarding documentation of IRB approval to the Roster.
Upon reception of the formal proposal to our department, the proposal will be submitted to the HD Scientific Advisory Committee for review. The HD Scientific Advisory Committee consists of 9 members and majority approval must be obtained in order to authorize use of the HD Roster for subject recruitment.
If a study receives HD Scientific Advisory Committee approval for use of the HD Roster, subject recruitment letters are sent to the specific subject population identified for research. A nominal fee depending on the scope of the mailing will be charged to cover the cost of postage and envelopes.
All interested participant information will be forwarded on to the researcher.
All publications resulting from the proposed research must cite the Roster.
The HD Roster must be cited in any publications, conferences, or any other presentations of material resulting from the HD Roster use. Please use one of the following acknowledgement languages below:
In the text body to reference: Subjects (data) were recruited from the National Research Roster for Huntington Disease Patients and Families (HD Roster), located at Indiana University School of Medicine.
In the acknowledgments at the end of the paper: Our thanks to the National Research Roster for Huntington Disease Patients and Families (HD Roster), located at Indiana University School of Medicine.
The HD Roster should receive a copy of any cited materials for our files.
Please submit all proposals to:
Danielle E. Smith, BS, CCRP
Health Information and Translational Sciences Building
410 West 10th Street
Indianapolis, IN 46202-3002