Data and/or biomaterials in the REGISTRY database are available to researchers. You may apply to the Scientific and Bioethics Advisory Committee (SBAC) to use clinical data and/or biomaterials collected through the efforts of EHDN.
REGISTRY data are available as the REGISTRY dataset (RDS), with a format similar to the Enroll-HD periodic datasets (PDS), using the same recoded IDs. You can find the documentation with all request forms on the right hand side. The dataset has been “coded” (e.g. for participants with very high CAG values, the exact value is not provided but all similar cases are grouped as CAG > 70).
If you need ungrouped data and/or data not provided in the RDS, you can apply for a specified dataset. Note: For genetic modifier studies please also read EHDN Genetic Projects
In order to submit a request for the RDS, a specified dataset or for biosamples, you need to use our webportal; the request forms, as well as guidelines documents and data use agreement template, are available on the right. The review procedure has been simplified for RDS submission or for renewable biosamples request, with a review conducted by the SBAC and EC chairs.
Applicants are requested to submit (submission page) and are responsible for providing:
Name, address, phone number of the applicant and co-applicants
Name of the institution of the applicant
Project title and summary (word limit 250 words, for specified data or non-renewable biosamples request); for RDS, you can copy your project description in the “summary” field.
the request form
date of application
date of requested data access
The dataset you request (RDS or specified dataset). For a specified dataset, please refer to the data dictionary for the type of data you require. A clear specification of the information needed will facilitate the provision of data and/or biomaterials
For a specified dataset, specify the number of participants and/or biomaterials requested
if an approval from an ERB was granted, upload the respective document (upload word document or scanned and uploaded as image file e.g. GIF or JPG)
NB: The preparation of biomaterials involves consumables and labour. For this reason, applicants who wish to receive biosamples will have to contribute to the cost of preparation and delivery. Sample preparation cost and shipment depend on e.g. the number of samples and their destination. Therefore, the total cost may vary. We therefore recommend that applicants contact Central Coordination (
) before they submit their application.
Registry Biosamples Storage and Processing Cost Table
The table below provides the types of available biosamples, the aliquot size and processing cost per such biosample. Academic use is offered at a 20% discount.
Unit Price Academic1
Unit Price Industrial1
Vial (1x106 cells)
Lymphoblastoid cell (LBC) line
Vial (1x106 cells)
DNA from LBCs
Vial (5 µg)
DNA from LBCs in 96-well format
Single well2(5 µg)
DNA from Whole Blood
Vial (5 µg)
1 Prices do not include shipping and handling costs. 2 Price quoted is for a single well on a 96-well plate.
Deadlines for applications: The projects will be discussed during the monthly telephone call of the SBAC, if the application is submitted by the first of the respective month.
RDS Reference Guides
Data support documents provide information about the REGISTRY dataset (RDS).
The data use agreement is not negotiable. Please return this agreement with missing information filled to
and indicate the post address to send copies of the agreement for signature. Ulm University requires paper copies of the agreement; the signature process will be initiated from Ulm.