Consent

This screener/consent form will determine your eligibility for Disability as Diversity: Reducing Researcher Roadblocks (D2/R3). If eligible, you will be prompted to complete the survey. The survey should take about 15 minutes.

The screener to determine your eligibility for this study will take about 2 minutes.

If you are deemed eligible and consent to take the study survey, that survey will take about 15 minutes. After completing the survey you can choose to: a) receive a $50 Amazon gift card or b) select a non-profit that you wish to donate your $50 incentive to.

1.In the last 3 years, have you been involved in Human Subjects Research (i.e. interviews, case studies, focus groups, surveys, etc...)

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2. Has the majority of your research work involved people age 18 or above?

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3. Your research work primarily focuses on the disability population?

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ALBERT EINSTEIN COLLEGE OF MEDICINE/INSTITUTE FOR CLINICAL AND TRANSLATIONAL RESEARCH DOCUMENTATION OF INFORMED CONSENT

Introduction

You are being asked to participate in a research study called Disability as Diversity: Reducing Researcher Roadblocks (D2/R3). Your participation is voluntary -- it is up to you whether you would like to participate. It is fine to say "no" now or at any time after you have started the study.

The researcher in charge of this project is called the Principal Investigator. Her name is Dr. Karen Bonuck.
You can reach Dr. Bonuck at:
Office Address: 1300 Morris Avenue
City, State Zip: Bronx,
NY 10461
Telephone #: 718 430 4085
For questions about the research study, or if you believe you have an injury, contact the Principal Investigator or the IRB.

The Institutional Review Board (IRB) of the Albert Einstein College of Medicine and Montefiore Medical Center has
approved this research study. If you have questions regarding your rights as a research subject you may contact the IRB office at 718-430-2253, by e-mail at (irb@einstein.med.edu),
or by mail:
Einstein IRB Albert Einstein College of Medicine
1300 Morris Park Ave.,
Belfer Bldg #1002
Bronx, New York
10461

Support for this research study is provided by the National Center for Advancing Translational Science.

Why is this study being done?

You are being asked to be in one part of the larger D2/R3 study. Briefly, the goal of D2/R3 is to increase the number of people with intellectual and developmental disabilities (PWI/DD) in medical research studies. One way to do this is to understand and then reduce researcher roadblocks to their greater inclusion in studies.

Why am I being asked to participate?

You are being asked to participate because your research involvement over the past 3 years is/has included:
(e.g. qualitative, cohort, RCT studies, survey studies)

Area- involves any of the following: Alzheimer's/Dementia, Asthma, Diabetes, Epilepsy, Gastrointestinal, Heart Disease, Psychiatric, Obesity
Role- includes any or all (conceptualization, grant-writing, literature review, patient recruitment, data analysis, instrument development)
Position- on research team including any/all of the above (Research Assistant, Principal Investigator, Investigator, Project Manager/Study Coordinator)
Adults- your research is not solely focused on children (i.e. < 18 yrs old)
PWI/DD- your research is not solely focused on PWI/DD

What will happen if I participate in the study?

If you choose to participate in this study you will complete an online survey one time. The survey is about factors that researchers may consider regarding if/whether/how they incorporate disability into their work. You will receive a link to complete the survey via REDCap.

Immediately afterwards, you will receive the results of scored items (e.g. those with validated cut points.)

How many people will take part in the research study?

You will be one of 200 research team members taking part in this study.

Will there be audio and/or video recording?

Information Banking (Future Use and Storage)

No Data is Stored

Information about you will be kept as long as required by regulations and institutional policy, but will not be used for future studies.

Will I be paid for being in this research study?

After completing the survey, you can choose either to:
• Receive a $50 incentive in the form of an Amazon gift card.

-OR-

• Donate the $50 incentive to a non-profit

Will it cost me anything to participate in this study?

There will be no cost to you to participate in the study.

Confidentiality

Are there any times you would not keep my data confidential?

Are there any risks to me?

We do not think there are any physical risks related to participating in this research study. You can choose not to answer any questions that make you feel uncomfortable. Individual scores (per above) will be provided once the online module is completed. This could lead to a bit of unease, as the anticipated outcomes might differ from the actual scores.

Are there possible benefits to me?

You will not experience any direct benefits personally from participating in this study. We hope you will participate because the study will generate important information regarding inclusion of PWI/DD in research studies.

What choices do I have other than participating in this study?

You can refuse to participate in this study.

Are there any consequences to me if I decide to stop participating in this study?

No. If you decide to take part, you are free to stop participating at any time without giving a reason.

Can the study end my participation early?

Your participation will end if the investigator or study sponsor stops the study earlier than expected.

CONSENT TO PARTICIPATE

I have read the consent form and I understand that it is up to me whether or not I participate. I know enough about the purpose, methods, risks and benefits of the research study to decide that I want to take part in it. I understand that I am not waiving any of my legal rights by signing this informed consent document. I will be able to download a signed copy of this consent form.

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View equation

4. Which of the following institutions do you represent?

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First Name:

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Last Name:

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Name Signature (Note: Please download the digital consent form in the event that you experience difficulties claiming your incentive)

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Add signature

Date

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D-M-Y

We're sorry, but based on your responses you are ineligible for this study. On behalf of D2/R3 we thank you for your time.

Would you like to tell us why you are choosing not to participate in this study?

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You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.