Consent Form

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Thank you for your interest in our research! If you have Alzhiemer's Disease, or any form of cognitive impairment, please visit our Brain health database at www.bit.ly/UMass-AD

To join the database, please review and sign the consent form below.

After you submit the form, we will ask you for your contact information. Next, we will ask a few more questions to determine your eligibility.

Consent Form for Participation in a Subject Recruitment Database
University of Massachusetts Amherst
Name of Researcher: Rebecca Spencer
Name of Subject Recruitment Database: UMass Adult Recruitment Database

1. WHAT IS THIS FORM?

This form is called a Consent Form. It will give you information about the Recruitment Database so you can make an informed decision about whether or not you would like your name and information to be included in this catalogue of information.

2. WHAT IS THE PURPOSE OF THIS SUBJECT RECRUITMENT DATABASE?

The purpose of this subject recruitment database is to facilitate research on midlife and older adults.

3. WHO IS BEING ASKED TO PARTICIPATE IN THIS DATABASE?

Volunteers over 18 years of age who are interested in being contacted about aging studies at UMass Amherst will be added to this database.

4. WHAT WILL MY PARTICIPATION IN THIS DATABASE INVOLVE?

If you agree to be included in the recruitment database you will receive phone calls or emails from researchers asking you to participate in their current research when experiments become for which you qualify. You will not be contacted for more than one research study per month and probably will be contacted much less often than this.

This database will consist of a spreadsheet containing a coded identifier, your date of birth, years of education, gender, dominant hand, height, weight, and current diagnoses. These descriptions, including years of education, are generally used to match participants across groups in experiments or to determine whether you meet study criteria. Additionally, the answers to the following questions will be included: "Is English your first language (Yes or No)?" and "Do you have normal or corrected-to-normal vision (Yes or No)?". To facilitate the timing and frequency of contact, we will also keep track of the experiments that you participated in, date of last contact, and success of contact (e.g., no answer, participated, etc).

5. WHAT ARE THE POSSIBLE BENEFITS OF MY PARTICIPATION IN THIS DATABASE?

You may not directly benefit from being included in this database; however, we hope that your inclusion in the database may facilitate research conducted at UMass Amherst.

6. WHAT ARE THE POSSIBLE RISKS OF MY PARTICIPATION IN THE DATABASE?

There are not any risks associated with being included in this database. Utmost attention will be given to keep your information confidential.

7. HOW WILL MY PERSONAL INFORMATION BE PROTECTED?

There are limited possible risks to being included in the database, although the confidentiality of your information could be at risk. The researchers will keep all database records in a secure location. All electronic files (e.g., database, spreadsheet, etc.) containing identifiable information will be password protected. Any computer hosting such files will also have password protection to prevent access by unauthorized users. The researchers will be the only ones with access to your personal information on a database called REDCap. Contact information will be permanently deleted once a participant has been contacted and the database has been updated on the outcome of the contact.

8. WHO WILL HAVE ACCESS TO MY INFORMATION?

Only the members of the research staff will have access to this database. Researchers will be able to view non-identifying characteristics of participants in the database - e.g., date of birth, sex, handedness, years of education, medications they are taking, and notes about study preferences. Only the database manager, Mary Emma Searles, will be able to view your contact info. She will release contact info to users in an encrypted, password protected spreadsheet, that investigators will be asked to delete after they have finished contacting those participants.

Currently, Profs. Rebecca Ready, Rebecca Spencer, Linda Isbell, Youngbin Kwak, and Alexandra Jesse from the Department of Psychological & Brain Sciences, Profs. Jane Kent, Katie Becofsky, Mark Miller, Katherine Boyer, and Douglas Martini from the Department of Kinesiology, Prof. Rachel Walker from the College of Nursing, Michael Busa, Gwenael Layec, and Howard Smithline from the Institute of Applied Life Sciences, Lynnette Sievert from the Department of Anthropology, and Ravi Karkar from Computer Science, are faculty and staff who are currently approved to use this database. However, as new graduate students or faculty become interested in conducting research on midlife and/or older adult populations, they will be given access to the database if approved by the University of Massachusetts Institutional Review Board (i.e., human ethics committee).

9. WHAT IF I HAVE QUESTIONS?

Take as long as you like before you make a decision. We will be happy to answer any question you have about this database. If you have further questions about this database you may contact the database manager, Mary Emma Searles (at msearles@umass.edu); the principal investigator, Rebecca Spencer (at rspencer@umass.edu or 413-545-5987); or the database researcher listed below who is obtaining this consent. If you have any questions concerning your rights as a research subject, you may contact the University of Massachusetts Amherst Human Research Protection Office (HRPO) at (413) 545-3428 or humansubjects@ora.umass.edu.

10. MAY I WITHDRAW MY CONSENT FOR PARTICIPATION IN THE DATABASE?

You do not have to be a part of this database if you do not want to. If you agree to be in the database, but later change your mind, you may drop out at any time. There are no penalties or consequences of any kind if you decide that you do not want to participate. Should you decide to drop out, your contact information will immediately be deleted from the database. When you are contacted and the study is described to you, you are under no obligation to participate if you do not want to.

11. SUBJECT STATEMENT OF VOLUNTARY CONSENT
I have read this form and decided that I will participate in the subject recruitment
database. The general purposes and particulars of the database as well as possible hazards
and inconveniences have been explained to my satisfaction. I understand that I can
withdraw at any time.

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