PKD RRC Joint Clinical Data Request Form – PKD Research Resource Consortium

Requestor Name*

First Last

Requestor's Institution / Organization*

Requestor's Address*

Street Address Address Line 2 City State / Province / Region ZIP / Postal Code Country

Requestor's Phone*

Requestor's Fax

Requestor's Email*

Requestor's Affiliation*

Select one.

Academic
Industry
Other

Type of Request*

Select one or more.

Biospecimens
Data

Proposed Use of Biospecimens*

Please provide a brief description of the proposed use of biospecimens including: specimen type(s) (urine, plasma, sera, DNA); volume of each specimen type; proposed laboratory measurements and experiments utilizing these specimens; and requirements and preferences for specimen collection and pre-analytic processing.

Proposed Data Analysis*

Please provide a brief description of your data analysis plan including primary outcome measures; group or predictor variables; and potential confounder variables.

Key Demographic/clinical inclusion/exclusion criteria to defined cohort*

Please briefly describe how you will define the sample of participants for analysis including demographics, clinical characteristics (e.g., Mayo imaging class, PKD-related complications); kidney function; and/or genotype.

Demographic/clinical variables being requested*

Please provide a list of proposed variables being requested for your analyses (please see data dictionary on PKD-RRC website for available variables by data category). You may specify specific variable names or specific variables by content (e.g. “Total Kidney Volume”, “PKD genotype”, “Blood pressure”).

Describe how newly generated measurements will be returned to the PKD-RRC database.

If you are proposing to perform new measures in stored biospecimens or derive novel measures from existing clinical/demographic/laboratory variables, please provide a description of how and when these measures may be subsequently shared with the PKD-RRC and added to the Joint Clinical Database after proposed analyses have been completed.

Describe methods to protect the security and confidentiality of the PKD-RRC data you will receive.*

Material Transfer Coordinator /Admin

Please provide the name and email address of the MTA coordinator or administrator. This second contact person is required. Once you have placed a request for materials through the website, the information provided will be sent to the PKD RRC MTA office for review. The MTA office will reach out to your institution to start the process of executing the agreement.

MTA Coordinator / Admin Name*

Name

MTA Coordinator / Admin Email*

Email address

MTA Coordinator / Admin Phone*

Phone

Material Transfer Agreement

Material Transfer Agreement for your records only.

IRB Review

Please note: you will be required to provide evidence of IRB review (either human subjects approval or determination of exemption from human subjects review) by your institution before the data and/or specimens can be shared. However, you may initiate the request process before such IRB review has been completed.

Questions?

Please contact us at data-request@pkd-rrc.org.

Material Transfer Coordinator /Admin

Material Transfer Agreement

IRB Review

Questions?

Contact us if you have a question, comment or an idea for a new reagent

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