Applying for an account is straightforward – agree to the HDinHD data use agreement and terms & conditions, complete this form and within 3 business days of submission, you should receive an email allowing you to login after changing your temporary password.
You must read and accept the HDinHD Data Use Agreement and Terms & Conditions before applying for an HDInHD account.
THE RECEIPT AND USE OF DATA IN THE HDINHD DATABASE REQUIRES THAT THE ORGANIZATION (THE “RECIPIENT”) REQUESTING SUCH DATA TO ENABLE THE RECIPIENT’S RESEARCHER (THE “RECIPIENT RESEARCHER”) TO PERFORM RESEARCH AGREES TO THE TERMS AND CONDITIONS OF USE SET FORTH IN THIS HDINHD DATABASE DATA USE AGREEMENT (THIS “AGREEMENT”).
PLEASE READ THIS AGREEMENT CAREFULLY BEFORE DOWNLOADING AND/OR USING ANY DATA IN THE HDINHD DATABASE. BY CLICKING “AGREE TO/ACCEPT”, THE RECIPIENT IS AGREEING TO BE BOUND BY THE TERMS AND CONDITIONS OF THIS AGREEMENT.
The mission of CHDI Foundation, Inc. (“CHDI”) is to facilitate and enable the development of therapeutics that will substantially improve the lives of individuals affected by Huntington’s disease (“HD”) as quickly as possible.
In furtherance of that mission, CHDI seeks to make data that may be useful for HD-related research available to the research community for HD-related research purposes.
The Recipient desires to obtain certain of such data from CHDI to enable the Recipient Researcher to perform research that furthers the development of treatments of HD.
CHDI is willing to make such data available to the Recipient to enable the Recipient Researcher to perform research that furthers the development of treatments of HD.
This Agreement sets forth certain terms and conditions to govern the use of such data by the Recipient.
In consideration of the mutual representations, warranties and covenants contained herein and other good and valuable consideration, the receipt and sufficiency of which are hereby acknowledged, the Recipient agrees as follows:
(a) “Data” means any applications and data provided to, or obtained by, the Recipient from the HDinHD Database. For the avoidance of any doubt, Data does not include HD-Related Research Results.
(b) “HDinHD Database” means that collection of applications and data made available through HDinHD.org.
(c) “HD-Related Research” means any activity useful for the creation, development, manufacture or distribution of a product or service for the diagnosis, treatment, cure or prevention of HD other than (i) the manufacture or distribution of any product or service for sale or (ii) the sale of any product or service. For the avoidance of doubt, HD-Related Research shall not include any right to (A) manufacture or distribute any product or service for sale or (B) sell any product or service.
(d) “HD-Related Research Results” means all data, formulae, outcomes or other results produced by the Recipient in the course of conducting HD-Related Research using the Data.
(a) “Ownership of the Data.” As between CHDI and the Recipient, CHDI retains ownership of the Data.
(b) “Ownership of HD-Related Research Results.“As between CHDI and the Recipient, the Recipient retains ownership of all HD-Related Research Results (except that, as between CHDI and the Recipient, CHDI retains ownership rights to any Data included therein).
(a) “Use of the Data by the Recipient,” The Recipient agrees:
(i) to use the Data for the sole purpose of conducting Research that is directed and overseen by the Recipient Researcher; and
(ii) to use Data in compliance with all applicable federal, state, local, international, health authority and institutional laws, rules, regulations, orders and guidelines; and
(iii) to maintain, store and treat the Data in the same manner, and with the same level of care (but in no event less than a reasonable level of care), as the Recipient would maintain, store and treat its own proprietary or confidential information to prevent its unauthorized transfer, disclosure or publication, as applicable;
(iv) to the extent the Data includes data collected from research participants in clinical studies, not to use Data to attempt to determine, or determine, the identity of any of the research participants from which the Data were collected; and
(v) subject to, and except as expressly permitted by, this Agreement or otherwise expressly consented to in writing by CHDI, not to transfer or disclose the Data to any third party; and
(vi) subject to, and except as expressly permitted by, this Agreement or otherwise expressly consented to in writing by CHDI, not to publish the Data; and
(vii) to report to CHDI any use, transfer, disclosure or publication of the Data not expressly permitted by this Agreement within 10 days of becoming aware of any such use, transfer, disclosure or publication.
(b) “Destruction of Certain Data upon Request.” To the extent the Data includes data collected from research participants in clinical studies, from time-to-time a research participant whose genotypic or phenotypic data is included in the Data may request that their genotypic or phenotypic data no longer be stored and used for research. To accommodate that circumstance, upon notice from CHDI the Recipient will appropriately destroy or discard, and discontinue use of, all of the Data identified by CHDI in such notice.
(c) “Provision of Data to Third Parties to Replicate Published HD-Related Research Results.” In addition, CHDI agrees, upon the written request of the Recipient, to provide the same Data provided to the Recipient under this Agreement to any third party that desires to attempt to replicate HD-Related Research Results published by the Recipient Researcher; provided, that, such third party has executed and delivered a HDinHD Database Data Use Agreement.
(a) “Termination” This Agreement will automatically terminate upon a material breach of any representation, warranty or covenant of this Agreement by the Recipient and such breach is not remedied within 45 days of the receipt by the Recipient of notice of such breach from CHDI.
(b) “Effect of Termination” Upon any termination of this Agreement, the Recipient (i) will immediately discontinue its use of the Data and (ii) will immediately and appropriately destroy or discard the Data.
(c) “Survival of Certain Provisions” This Section 10 and each of Section 1, Section 2, Section 4 through Section 9 and Section 11 through Section 18 shall survive any termination of this Agreement.
If to CHDI to:
CHDI Foundation, Inc.
c/o CHDI Management, Inc.
350 Seventh Avenue, Suite 200
New York, NY 10001
Attention: Chief Administrative Officer
With a copy to:
Attention: Chief Legal Officer
If to the Recipient, to the addresses for the Recipient and the Recipient Researcher maintained in the Recipient Researcher’s HDinHD Database Access Account.
1By clicking, I agree to the above Terms and Conditions, you, the recipient researcher, represent and warrant that you have the authority (corporate or otherwise) to agree to/accept the above terms and conditions on behalf of your organization (the recipient).