Newly Approved IHCC Member Cohort Form

This form in for newly approved member cohorts to provide additional cohort information.

First name*

Last name*

Email*

Link to your Bio

Organization*

Country*

Cohort Name*

Countries involved in cohort/study*

Cohort/Study Website

Please enter the name of the Principal investigator/Lead for your cohort*

Please enter the email address for the Principal investigator/Lead of your cohort.

Please provide a brief description of the goals of your study*

In what year did enrollment begin for your study?*

Were your participants chosen based on a specific disease process or existing condition? *

Yes

If yes, please indicate which condition or disease?

What is the target number of participants for enrollment?*

What is the current number of participants enrolled?*

Is enrollment in your study ongoing or closed?*

Ongoing

Closed

If enrollment is closed, in what year did your study close enrollment?

Is genotyping being done on some or all of your study participants?

Some

All

No genotyping at this time

Is genomic sequencing being done on some or all of your study participants?

Some

All

No genomic sequencing at this time

Is any other molecular analysis performed?

Do study participants provide consent regarding sharing of their data outside the initial study investigators?*

Yes

How are data or specimens from the cohort made available for research? Any limitations on who can access the data (e.g. by country or sector?)

Is Genomic Data collected by your cohort?*

Yes

Is Environmental Data collected by your cohort?*

Yes

Is Biospecimens collected by your cohort?*

Yes

Is Phenotypic Data collected by your cohort? *

Yes

Are you willing and able (through having the appropriate consents and/or human subject ethics committee approval) to share data or metadata with IHCC members?*

Yes

Are you open and able to share your data for collaboration with other cohorts (pending project specific terms and conditions)?*

Yes

Are you willing to share Individual data (redacted to protect confidentiality) from your cohort?*

Yes

Are you willing to share Summary data (counts, distributions) from your cohort? *

Yes

Are you willing to share Metadata (descriptive information on data collection methods) from your cohort?*

Yes

Are you willing to share Case report forms and other data collection materials from your cohort?*

Yes

Which IHCC interest area would you or any of your staff like to actively participate in?

Data Standards and Infrastructure

Scientific Strategy and Cohort Enhancement

Workforce and Training

Policy

I consent to have IHCC store my submitted information.*