Privacy Policy

By accessing the COMBINE dataset website ( www.combinedata.org), you acknowledge and accept this Privacy Policy. Your rights and our procedures related to privacy and access are described below.

We may modify this Privacy Policy in whole or in part at any time. If we modify the Privacy Policy, we will note the date upon which modifications become effective at the top of this page. Please review changes carefully, and if you do not agree, do not use the COMBINE website.

Who we are

We are a consortium of sites/investigators interested in understanding factors that influence motor development in neurodivergent individuals across the lifespan. We maintain a dataset of deidentified scores on commonly-used assessments of motor skills and related domains that are voluntarily contributed by consortium members at sites/institutions around the world.

The consortium is led by three Co-Principal Investigators:

Haylie L. Miller, Ph.D. (University of Michigan, millerhl@umich.edu)

Priscila M. Tamplain, Ph.D. (University of Texas at Arlington, priscila.tamplain@uta.edu)

Nicholas E. Fears, Ph.D. (Louisiana State University, nfears@lsu.edu)

The consortium website address is: www.combinedata.org.

The consortium email is COMBINEdataset@gmail.com.

COMBINE Terminology & Definitions:

Authorized COMBINE Dataset User: A Consortium Member/Affiliate who has been authorized by the COMBINE Co-Principal Investigators to access the COMBINE dataset for the specific purpose described in an approved Data Use Proposal.

Consortium Affiliate: A person sponsored by a Consortium Member who contributes to the COMBINE dataset under the supervision of the sponsoring Consortium Member. This designation is most often used for a student/trainee, staff member, or other individual who has permission to access the COMBINE dataset to support work initiated by a Consortium Member and approved by the COMBINE Co-Principal Investigators.

Consortium Member: An investigator who has contributed data to COMBINE.

Data: Includes but is not limited to all information contributed by a Consortium Member, such as data files, deidentified participant demographics, coding sheets, analysis scripts and output, comments, tags, documents, and descriptive text.

Data Contribution Form: Investigators wishing to contribute data to COMBINE will be required to complete this form, which contains information about the investigator(s)/site(s)/institution(s) and funding source(s) associated with the data being contributed. This information will be used to support data management processes, streamline contribution for investigators/sites/institutions with multiple separate contributions, and facilitate appropriate acknowledgement in resulting work products. This form will generate a REDCap ID for each contributor.

Data Use Proposal: Investigators wishing to access the COMBINE dataset will be required to complete this form describing their proposed use of the data. The form will be reviewed by the Co-Principal Investigators for appropriateness and overlap with existing or previously-proposed work. Proposals will be reviewed in the order in which they are received, and Consortium Members’ proposals will be prioritized over non-members’ proposals.

Deidentified Data: Information that can not be used singly to determine the identity of research participants or other individuals represented in the COMBINE dataset. Data contributed to the COMBINE dataset are required to be deidentified, but not anonymous. Investigator(s) may retain coding sheets that link the deidentified dataset that they contribute to COMBINE with their original identifiable dataset, as applicable under the regulations governing their original research.

Interest Form: The purpose of this opt-in form is for individuals to indicate interest in the COMBINE dataset. Personal or institutional information entered in this form will be used for correspondence related to the COMBINE dataset, including but not limited to: updates, changes, or improvements to the COMBINE website, the dataset, or processes/policies; dissemination of work products resulting from use of the dataset, addition of new consortium members or professional/community partners.

Professional Society Partners & Community Partners: These are groups or individuals interested in using the COMBINE dataset or results from research conducted with the dataset to engage in advocacy, outreach, education, or related purposes.

Site/Institution: An entity whose employees or students conduct scientific research, clinical services, or educational activities related to data contributed to the COMBINE dataset, or where research described in an approved Data Use Proposal will be conducted.

Users: All persons who access the COMBINE dataset website ( www.combinedata.org).

Cookies

If you fill in a form on our site, your browser may prompt you to opt-in to saving your name, email address and website in cookies. You do not have to opt-in to cookies to be part of the consortium, or to contribute or access data. These are for your convenience so that you do not have to fill in your details again if you complete a form on our site at a later date.

We do not sell information collected from cookies to any third party.

Embedded content from other websites

Pages on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.

We are not responsible for the activity of other websites.

How we use your data

If you fill out the interest form indicating that you would like more information about joining the consortium to contribute or access data, your responses will be shared with the Co-Principal Investigators (listed above) and their respective research teams.

If you contribute or access data from the COMBINE dataset, your name and affiliation (e.g., university/institution, lab, department, center, or similar) may be shared as a “Contributing Site/Investigator”, “Consortium Member”, “Consortium Affiliate”, or “Authorized COMBINE Dataset User” on this website (e.g., on the Who Are We page of this website), as well as in presentations, publications, grant applications, and related disclosures and acknowledgments. If you are an Authorized COMBINE Dataset User, your name and affiliation may be shared with Consortium Members upon request as described below.

If you contribute data to the COMBINE dataset, the data MUST be deidentified and formatted according to the COMBINE dataset template, which is available for download in .csv or .sps format on the How to Contribute page of this website. Your name and affiliation will also be associated with any data you contribute. At any time, Consortium Members may request a list of the names and affiliations of Authorized COMBINE Dataset Users who have accessed the data they contribute by emailing COMBINEdataset@gmail.com with the subject line “USER LIST REQUEST”.

Data will be shared with authorized COMBINE dataset users via a secure REDCap portal, following the access policies outlined on the How to Access Data page of this website. Your REDCap user ID and IP address will be used to track your access to the dataset so that we can identify the account responsible for any potential breach of REDCap security, terms of a Data Use Agreement/Data Use Proposal, or this Privacy Policy.

We may use contact information provided by Consortium Members, Consortium Affiliates, and individuals who complete the Interest Form at any time to distribute notifications of changes or updates/improvements to the COMBINE website, dataset, or policies. To opt out of receiving communications, please email COMBINEdataset@gmail.com with the subject line “OPT OUT”.

We may collect information from the devices and networks that you use to access the COMBINE dataset (via REDCap) or the COMBINE website (www.combinedata.org), including the date and time of your visit, the Application Programming Interface (“API”) you use, and your Internet Protocol Address (“IP address”; automatically assigned to a device when it accesses the internet). For example, we may log your IP address to determine website traffic patterns for purposes of system administration. We may also log your IP address and user ID when you access the dataset via REDCap.

How long we retain your data

The data you contribute to the COMBINE dataset are retained indefinitely. We also store the personal information you provide in the interest form indefinitely. This is so we can recognize and appropriately handle multiple contributions from a single site/institution or investigator, as well as any corrections or additions that happen after an initial contribution.

The Co-Principal Investigators can see and edit the data you contribute, as well as the information you provide in the interest form. We will not edit the data you contribute without your permission.

What rights you have over your data

You can request to receive an exported file of the data you have contributed or the information you provided in the interest form. You can also request that we erase any data you have contributed or information you provided in the interest form. This does not include any data we are obliged to keep for administrative, legal, or security purposes. To request that we delete any of the data you contribute or the information you provide in the interest form, please email COMBINEdataset@gmail.com with the subject line “Request to delete data”.

Where your data is sent & stored

Data you contribute or information you provide in the interest form are sent to and stored in a secure REDCap database administered by the Co-Principal Investigators and the University of Michigan (Michigan Institute for Clinical & Health Research, supported by NIH UL1TR002240).

For more information about security of data stored in REDCap, please visit the University of Michigan REDCap information page or REDCap’s home page (supported by NIH UL1TR000445).

The data contributed to the COMBINE dataset may be stored on server or on a cloud located outside of the country where data were originally collected or contributed. You should be aware that different countries have different data protection laws. If you are not sure whether this Privacy Policy is in conflict with the regulations that govern the site/institution where the data are collected or contributed, you should not contribute your data. Information contributed via the COMBINE website or through the REDCap portal will be transferred to the United States and may be transferred to servers or clouds located in other countries. By using the COMBINE website or the COMBINE REDCap portal, you agree to the terms of this Privacy Policy, regardless of your country of residence or origin, or the country in which the data were collected or contributed.

If you are a resident of or are located in the European Economic Area (“EEA”), you may have certain rights under the General Data Protection Regulation (“GDPR”). Personal data you provide is only collected with your consent, and may be transmitted outside of the EEA to the COMBINE website or COMBINE REDCap database (or computer servers maintained for the benefit of the COMBINE dataset). You may request access to your data; have incomplete or incorrect data corrected; have your data deleted, suspend or restrict use of your data, or withdraw your consent; request a copy of your personal data; or complain to a supervisory authority if you believe your rights under the GDPR are not being respected. A copy of your data will be provided to you upon request if you email COMBINEdataset@gmail.com with the subject line “GDPR DATA COPY REQUEST”. Your data will be deleted as soon as possible if you email COMBINEdataset@gmail.com with the subject line “GDPR DATA DELETION REQUEST”, with the exception of situations in which we must retain your data in order to comply with a legal obligation. If you believe that use of your data infringes on data protection laws, you have the right to file a complaint in the EU member state where you reside, where you work, or where the alleged infringement took place by contacting a supervisory authority responsible for data protection. The COMBINE dataset also includes data contributed by Consortium Members and/or collected from participants outside of the EEA. Consortium Members are required at the time of contribution to indicate whether or not the data were obtained with consent procedures adequate to meet GDPR provisions. For data collected from research participants in the EEA, only those data that meet GDPR provisions or that are exempt from GDPR regulation will be accepted. The COMBINE dataset may be accessed by Authorized COMBINE Dataset Users outside of the EEA.

Other regulatory considerations

Consortium members who contribute to and/or access the COMBINE dataset are expected to maintain compliance with the laws, regulations, and guidelines of their respective site(s)/institution(s), licensing organization(s), country/state/region/province, and ethics review board(s), as applicable. The COMBINE team does not assume any responsibility for regulatory oversight of ongoing studies associated with data contributed to the COMBINE dataset, or for regulatory oversight of the storage and use of the COMBINE dataset by consortium members who request access.

In order to contribute data to the COMBINE dataset, consortium members must have the permission of research participants or a waiver of the requirement for that permission by the site/institution that oversees/approves their research activities. Consortium members can contribute data as permitted by their institutions, including but not limited to data files, deidentified participant demographics, coding sheets, analysis scripts and output, comments, tags, documents, and descriptive text.