Motivations for Stem Cell Transplant Registry Participation
Phase: NA
Conditions: Healthy
Sponsor: Rutgers, The State University of New Jersey

 
 
 
Motivations to Transplant Registry Participation 
Intervention 
Protocol 
NCT ID # Pro2022000536 
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
Page 1 of 15 
 
 
 
 
 
INTERVENTIONAL 
RESEARCH PROTOCOL TEMPLATE 
(HRP-503a) 
 
 
 
 
STUDY INFORMATION 
 
 
Title of Project: 
Motivations for Stem Cell Transplant Registry Participation 
 
 
Principal Investigator Name 
Lauren Daniel, Ph.D. 
 
 
Principal Investigator Div. & Dept. 
Camden College of Arts and Sciences, Department of Psychology  
 
 
Principal Investigator Contact Info:  
Lauren.daniel@rutgers.edu 
311 N 5th St., Armitage 343, Camden NJ 
(856) 225-6535 
 
 
Protocol Version and Date: 
v3 6.8.23 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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Table of Contents 
Skip To Section: Hold CTRL + Click (Below) To Follow Link in Blue 
 
1.0 
Research Design 
 
 
1.1 
Purpose/Specific Aims 
 
 
1.2 
Research Significance 
 
 
1.3 
Research Design and Methods 
 
 
1.4 
Preliminary Data 
 
 
1.5 
Sample Size Justification 
 
 
1.6 
Study Variables 
 
 
1.7 
Drugs/Devices/Biologics 
 
 
1.8 
Specimen Collection 
 
 
1.9 
Data Collection 
 
 
1.10 
Timetable/Schedule of Events 
 
 
2.0 
Project Management 
 
 
2.1 
Research Staff and Qualifications 
 
 
2.2 
Research Staff Training 
 
 
2.3 
Other Resources 
 
 
2.4 
Research Sites 
 
 
3.0 
Multi-Center Research 
 
 
4.0 
Subject Considerations 
 
 
4.1 
Subject Selection and Enrollment Considerations 
 
 
4.2 
Obtaining Identifiable Information About Non-Subjects 
 
 
4.3 
Number of Subjects 
 
 
4.4 
Consent Procedures 
 
 
4.5 
Special Consent Populations 
 
 
4.6 
Economic Burden and/or Compensation For Subjects 
 
 
4.7 
Risks of Harm/Potential for Benefits to Subjects 
 
 
5.0 
Special Considerations 
 
 
5.1 
Health Insurance Portability and Accountability Act (HIPAA) 
 
 
5.2 
Family Educational Rights and Privacy Act (FERPA) 
 
 
5.3 
Code of Federal Regulations Title 45 Part 46 (Vulnerable Populations) 
 
 
5.4 
General Data Protection Regulation (GDPR) 
 
 
5.5 
 NJ Access to Medical Research Act (Surrogate Consent)  
 
 
6.0 
Data Management Plan 
 
 
6.1 
Data Analysis 
 
 
6.2 
Data Security 
 
 
6.3 
Data Safety And Monitoring 
 
 
6.4 
Reporting Results 
 
 
6.5 
Secondary Use of Data 
 
 
7.0 
Research Repositories – Specimens and/or Data 
 
 
8.0 
Approvals/Authorizations 
 
 
9.0 
Bibliography 
 
 
 
 
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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1.0 Research Design 
 
1.1 Purpose/Specific Aims 
The current study seeks to understand factors that influence college students’ likelihood of participating 
in the National Marrow Donor Program (NMDP)/Be the Match for bone marrow and stem cell donations. 
The secondary aim is to compare emotional and rational approaches to encouraging participation in 
the registry and how these approaches may impact intentions to participate in the NMDP.  
 
A.  Objectives  
1. The study will describe the role of demographic, personality, and psychosocial factors in attitudes 
towards participating in the National Marrow Donor Program.   
2. Two strategies for increasing motivation (emotional appeal or factual data on racial/ethnic 
disparities in representation on the registry) for enrollment will be tested. 
3. Strategies for enrollment will be compared by Race and Ethnicity to understand the best 
approaches to recruiting diverse students into the registry program.  
 
B.  Hypotheses / Research Question(s) 
Approximately 12,000 patients need a bone marrow transplant each year to treat their cancer or other 
hematologic condition, but only about 30% of these patients find matches within their families (National 
Marrow Donor Program, 2013). The NMDP maintains a list of potential donors through the “Be the 
Match” organization which often runs donor drives on college campuses. Bone marrow donors are 
matched on genetic similarities, making race and ethnicity an important component in finding a match 
between a patient and a potential donor. Donors registered with Be the Match are 67% White, making 
it more difficult for individuals of color to find good matches, which may delay transplants and ultimately 
impact survival and the success of transplants. Thus, diversity is an important component of enrolling 
potential donors in the transplant registry. Because the student body of Rutgers Camden is diverse and 
within the age range targeted to join the NMDP, understanding psychological factors that contribute to 
participation and the most effective strategies to cultivate enrollment intentions is an important step 
towards enhancing the diversity of the donor registry and improving health outcomes for patients of 
color. 
 
1. It is hypothesized that students who report high levels of altruism will be more likely to report an 
intention to enroll in the stem cell transplant registry.   
2. It is hypothesized that students who report high levels of knowledge about stem cell transplants 
will be more likely to report an intention to enroll in the stem cell transplant registry.   
3. It is hypothesized that high altruistic students will be more likely to enroll when presented with 
an emotional appeal.  
4. It is hypothesized that high knowledge students will be more likely to enroll when presented with 
a factual appeal. 
5. It is hypothesized that the rational appeal which focuses on health disparities will result in a 
higher likelihood of enrollment for students of color as compared to white students.  
6. It is hypothesized that self-esteem will differ between individuals who do and do not indicate an 
intention to enroll in the registry.   
 
1.2 Research Significance 
Previous international research has demonstrated that the potential to save lives is the most motivating 
factor in the decision to enroll in bone marrow registries while the biggest barriers are lack of information 
on the process and risks (Bart et al., 2014).Qualitative research supports that personality characteristics 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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such as altruism are important influences on intentions to register with NMDP and to later donate 
(Kaster et al., 2014) and altruism is described as central to the decision-making process in those who 
have gone through with donations (BIllen, Madrigal, Scior, Shaw & Strydom, 2017). However, when 
examining the relationship between altruism and intentions to enroll in the NMDP in a sample of medical 
students, altruism was not related to intentions (Narayaman et al., 2016).  Self-esteem has also been 
implicated in charitable donations (Surana & Lomas, 2014) and bone marrow donors report more 
positive sense of self post-donation (Butterworth el al., 1993), but self-esteem has not been examined 
as a correlate of decision making to participate in bone marrow registries. Thus, the role of personality 
characteristics in motivating participation in the NMDP are unclear but may be important correlates to 
consider.  
 
Knowledge about the bone marrow and stem cell donation process and how this information is 
communicated also appear to be important factors in whether participants enroll in the registry. 
Research in college students studying medically related fields has demonstrated that students hold 
many misconceptions about the donation process and those students with lower knowledge were less 
likely to indicate an intention to enroll (Vasconellos Nunes, & Feller, 2011). Further, knowledge about 
the process is generally higher in medical students who are enrolled in the registry (Narayaman et al., 
2016). As knowledge is generally low even among students with medically-oriented training, 
understanding how to best communicate about the NMDP to a general college audience is important.  
Specifically, emotional appeals have been found to be more effective in motivating participation in 
transplant registries when compared to rational approaches that presented statistics and facts about 
the transplant process (Studts et al., 2010). Emotional appeals that help participants envision specific 
patients and the positive outcomes of their donation may be especially important in increasing the 
likelihood that an enrolled individual follows through with the donation when asked (Vekaria et al., 
2020). What is not known though is how a rational appeal that includes information regarding the need 
for diversity may affect participation, especially in individuals from diverse backgrounds. To date, these 
different approaches to communicating information about bone marrow registries have not been studied 
in diverse college students.   
 
Demographic factors, such as race and ethnicity, are also important predictors as evidenced by the 
lower likelihood of finding a match for individuals of color suggesting a need for greater diversity in the 
registry (National Marrow Donor Program, 2013). Older research suggests that a willingness to donate 
does not differ between African Americans and White individuals, but White individuals may be more 
familiar with the registry, which in turn leads to greater participation rates (Onitilo et al., 2004). Women 
may also be more willing to register (Studts, et al., 2010), although this predictor is not consistent across 
all studies (Monaghan et al., 2020). Family cancer history is also an important factor in the likelihood of 
participating (Studts, et al., 2010).  
 
Our student body at Rutgers University Camden is very diverse and typically within the age range 
targeted by Be the Match, making it an important group to understand demographic, personality, and 
message communication factors that contribute to the likelihood of participation in the registry.  
 
 
1.3 Research Design and Methods 
 
A. Research Procedures 
This study is a randomized controlled trial that will randomize participants to receive either an 
emotional appeal about a child with cancer who needs a bone marrow transplant or a rational 
appeal using data on the racial/ethnic disparities within the transplant registry. (See Appendix A for 
condition prompts).  
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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Participants will be recruited through the Psychology Subject Pool through the SONA system which 
will then link students to the study measures in Qualtrics. Participants will be asked their age to 
confirm eligibility to participate (students must be between 18-35) and eligible students will be 
presented with the consent form in Qualtrics.  Participants will then be asked to complete measures 
of demographic information, personality/psychological characteristics, and transplant-related 
knowledge, intentions, and attitudes.  All participants will then be given background information on 
bone marrow transplants (See Appendix A for text). 
 
Randomization: Students will be randomized by sex in Qualtrics to the emotional presentation 
condition or the rational presentation condition. The emotional condition will tell the story of a 
fictional pediatric patient with cancer who needs a transplant.  The rational condition will describe 
the facts about the need for diversity in the registry (See Appendix A for condition prompts).     
 
After being presented with the rational or emotional appeal, participants will again be asked their 
intentions to register, their motivations for registering, and their mood.   
 
B. Data Points 
Study data will include demographic information and responses to questionnaires given during the 
survey in Qualtrics.  
 
C. Study Duration 
Participation will last approximately 30 minutes. 
 
D. Endpoints 
The study will continue to collect data until a sufficient sample size is accrued. 
 
1.4 Preliminary Data 
N/A 
 
1.5 Sample Size Justification 
Prior research has demonstrated an effect size of w=0.38 (medium effect) between an emotional and 
rational appeal, thus we expect a medium effect size (Studts et al., 2010). In order to compare the effect 
of the two conditions (emotional/rational) by race/ethnicity (White, African-American, Latinx considered 
as the primary groups represented, recognizing there will be others) we will need 300 participants to 
have 85% power to detect a medium effect with a p-value of 0.05. To be conservative and ensure we 
have a large enough sample of each race/ethnicity group, we will seek to enroll 400 students.   
 
1.6 Study Variables 
 
A.   Independent Variables, Interventions, or Predictor Variables  
The primary independent variable will be group (emotional or rational condition).  
 
Emotional Appeal:  Participants will be presented with a short vignette about a child undergoing 
cancer treatment and needing a bone marrow transplant in order to survive cancer.  A publicly 
available animation of a teddy bear and hospital tools is also included in this condition.  
 
Rational Appeal:  Participants will be presented with data regarding the importance of considering 
race/ethnicity when looking for a bone marrow transplant donor and the likelihood of finding a match 
based on the patient’s racial/ethnic background. An infographic depicting this information was 
created for this study. 
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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Secondary Independent Variables: Additionally, demographic factors (race/ethnicity, sex, age), 
Altruism, Self-Esteem and Knowledge will be tested as secondary independent variables.  
 
A full list of study measures is included in Appendix B.  
 
Construct/Measure Name 
Description 
Demographics 
(8) items will be used to assess the demographics of the 
student population. 
Altruism  
The Self-rated Altruism Scale (20 items) assesses altruistic 
behavior.  Specifically, the questions refer to certain altruistic 
actions that students have partaken in and their frequency of 
said activities (Rushton, Chrisjohn, & Fekken, 1981). 
Self-Esteem 
The Rosenberg Self-Esteem Scale (10 items) tests the self-
worth of an individual by testing the negative and positive 
feelings about ones’ self using a 4-point Likert scale 
(Rosenberg, 1965). 
Social Desirability 
The Marlowe Crown Social Desirability Index short form (13 
items) will be used to assess how much student responses are 
influenced by demand characteristics of participating in  
research (Fischer & Fick 1993). 
Healthcare Distrust 
The Healthcare Distrust Scale (10 items) assesses the level of 
trust participants have in the healthcare system. Specifically, 
the scale covers the positive and negative aspects of the 
healthcare system and how trust impacts choices (Rose et al., 
2004). 
Knowledge 
This knowledge measure tests (12 items) misconceptions 
about the bone marrow registry and will be used to assess the 
general knowledge of the population we are administering the 
survey in to see the depth of knowledge regarding the 
research topic.  This survey will also assesses opinions of 
participants regarding the process of going through a bone 
marrow transplant (Vasconellos 2011). 
History of transplant/donation 
Previous research by Narayanan et al., (2016) has included 
these 15 items to assess an individual’s familiarity with the 
transplant and donation process.  
Motivations to donate 
Participants are asked to rank order 11 possible reasons that 
they may decide to register for the transplant registry (Bart et 
al., 2014). Participants will complete this measure before and 
after the Emotional/Rational condition presentation. 
Attitudes towards bone marrow 
transplant 
Participants will be asked 9 questions about their attitudes 
towards joining the bone marrow registry and donating stem 
cells at a later date.  This measure has been used in previous 
research (Narayanan et al., 2016). 
Ambivalence  
The Simons Ambivalence Scale is a 7-item scale developed to 
assess feelings about solid organ donation(Gardner, 1987). 
The measure has been modified for stem cell donor 
participation (Fingerut et al., 2020) and 4 of the 7 items will be 
used in the current study.     
 
B.  Dependent Variables or Outcome Measures  
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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The primary dependent variable is intentions to register in the bone marrow transplant registry.   
 
Secondary Dependent Variables: Participants will be asked about how factual and how emotional 
they perceived the appeal they received is to determine if the manipulation worked.  We will also 
ask about their current mood again.  
 
Construct/Measure 
Description 
Intentions to register 
Participants will be asked 2 questions about 
whether they will register and the rate the 
likelihood of registering.  They will be asked 
these 
questions 
before 
and 
after 
the 
experimental manipulation. 
Manipulation Check 
Participants will be asked to rate how 
emotional and how factual the appeal they 
received was on a 1-7 scale. 
Mood 
Participant mood will be assessed pre/post 
survey, asking participants to rate their current 
mood on a 1-10 scale.  
 
 
1.7 Drugs/Devices/Biologics  
 
A. Schedule and Administration 
N/A 
  
B. Drug/Device Accountability and Storage Methods 
N/A 
 
1.8 Specimen Collection 
 
A. Primary Specimen Collection 
N/A 
B. Secondary Specimen Collection 
N/A 
 
1.9 Data Collection 
 
A. Primary Data Collection 
 
Location: Data will be collected online using the secure Qualtrics survey platform 
 
Process of Data Collection: Participants will log into Qualtrics from their own device and 
complete survey data remotely.  We will review collected data on a weekly basis for 
completion.   
 
Timing and Frequency: Data collection will take place during a single session during the 
2022-2023 and 2023-2024 school year.  
 
Procedures for Audio/Visual Recording: N/A   
 
Study Instruments: The survey instruments have been used in previous research studies.  
All measures are listed in section 1.6 and copies of all measures have been uploaded to the 
eIRB application (Appendix B). 
 
Ethnographic Studies, Interviews, Or Observation: N/A 
 
Subject Identifiers: No identifying information will be collected from the participants.  
Students log into the SONA system which manages participation credit without the research 
team having to collect any identifiable information from participants.   

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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B. Secondary Data Collection  
N/A 
 
1.10 Timetable/Schedule of Events 
This is a single visit study; thus all study procedures will happen after consent in one session.    
 
 
2.0 Project Management 
 
2.1 Research Staff and Qualifications 
Dr. Lauren Daniel is a Clinical Psychologist in the Department of Psychology and Health Sciences at 
Rutgers Camden. Her research focuses on cancer research and how psychosocial factors influence 
health behaviors and quality of life.   
 
2.2 Research Staff Training 
All persons assisting with the research will maintain active CITI Training Certifications.   
 
2.3 Other Resources  
The study will draw on the students in the Psychology Subject Pool which is maintained by the 
Department of Psychology. Because the study is conducted online, there are no additional physical 
resources needed. There are no additional medical or psychological resources needed because the 
study poses no reasonably foreseeable risks to subjects.   
 
2.4 Research Sites 
Data will be collected and stored online in the secure Qualtrics Server hosted by Rutgers University.  
 
 
3.0 Multi-Center Research 
N/A 
 
4.0 Subject Considerations 
 
4.1 Subject Selection and Enrollment Considerations  
 
A. Method to Identify Potential Subjects 
Potential subjects for the study will be identified by their current enrollment in Introduction to 
Psychology (50:830:101) or Method and Theory of Psychological Research (50:830:255). 
B. Recruitment Details 
The study will be posted to the Psychology Subject Pool which is hosted on the website SONA, 
maintained by the Psychology Department. Students are given the opportunity to participate in 
research as part of their class experience and receive class credit for participation. No additional 
recruitment will take place.  
C. Subject Screening 
Describe whether and how individuals will be screened for eligibility and by whom. 
 
Inclusion Criteria 
Students enrolled Introduction to Psych (101) and Method and Theory (255) who are between 
the ages of 18-35 will be eligible to participate. Students will be asked to confirm that they are 
in the specified age range in Qualtrics before completing the informed consent form.  
 
Exclusion Criteria 
Students under 18 years of age or over 36 or older will be excluded. 
D. Privacy Protections 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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This study will not collect any identifiable participant data. Sona creates a unique randomly 
generated participant ID that is used in Qualtrics to collect data.  The Sona system will separately 
maintain participant email addresses for the purpose of assigning class credit, but this will not be 
linked to the data collected in Qualtrics.  When a student completes the survey in Qualtrics, they 
are returned to the Sona system so that they may receive class credit.  Researchers will only 
identify data by the unique randomly generated participant ID.   
 
4.2 Obtaining Identifiable Information About Non-Subjects 
N/A 
 
4.3 Number of Subjects 
 
A. Total Number of Subjects 
It is expected that 500 students will be screened to accrue 400 complete subjects needed to analyze 
the hypotheses of this study.   
B. Total Number of Subjects If Multicenter Study 
N/A 
C. Feasibility 
The Psychology Subject Pool typically has between 500-700 students in the fall and 200-300 students 
in the spring, making recruiting feasible in one-two school years. 
 
4.4 Consent Procedures 
 
A. Consent Process 
 
Location of Consent Process 
The consent process will take place in Qualtrics after participants confirm eligibility.  
Participants will be required to agree to the document by checking a box in order to access 
the survey tools.  
 
Ongoing Consent 
N/A 
 
Individual Roles for Researchers Involved in Consent 
Researchers will develop the informed consent document but will not otherwise be directly 
involved in obtaining consent from participants. 
 
Consent Discussion Duration 
Participants will be given the consent form at the beginning of the study and will be allowed to 
consider participation for as long as possible. Contact information will be available for the 
principal investigator should the participant have questions or concerns regarding the study 
or its procedures. 
 
Coercion or Undue Influence 
The consent document will clearly state that participation in the study is voluntary.  
Additionally, course instructors will make clear to students that participation is voluntary and 
students will be given an alternative assignment for course credit should they not want to 
participate in research.   
 
Subject Understanding 
Before a subject can access the study survey tools, they will be required to indicate that they 
understand the nature of the study and consent to participate. 
 
Protecting Privacy 
Surveys will be completed online on the students’ electronic devices, no one will know of their 
participation.  
 
B. Waiver or Alteration of Consent Process  
 
Waiver or Alteration Details 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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N/A 
 
Destruction of Identifiers 
N/A 
 
Use of Deception/Concealment 
Participants will be given general details about the study activities and potential risks; however 
they will not be provided with specific hypotheses of the study. Specifically, the participants will 
be told that the study is interested in learning about students’ knowledge and attitudes about 
participating in the NMDP, but students will only view one of the potential conditions (rational 
or emotional) to understand if these different methods differentially impact intentions to 
participate in the registry. Omitting information about the specific hypotheses is necessary to 
fairly test hypotheses and avoid demand characteristics.    
a. Minimal Risk Justification 
This study is minimal risk because we will be providing students with very brief information 
about the reasons individuals may decide to participate in the NMDP. This information is 
like that provided to encourage participation in other donation programs such as blood 
donation that is regularly broadcasted on radio and television advertisements.  
b. Alternatives 
Any alternative that involves divulging true purpose would not allow a fair test of the 
hypotheses. 
c. Subject Debriefing 
All participants will be provided with links to learn more about the Be the Match program at 
the end of the study. Participants will also be given the opportunity to ask questions of the 
research team through the PI’s email address.   
 
C. Documentation of Consent 
 
Documenting Consent 
Subjects’ consent to participate in the study will be documented in their survey results, as 
they will be required to indicate that they understand the study and consent to participate 
before they are able to access the survey tools. 
 
Waiver of Documentation of Consent (i.e., will not obtain subject’s signature) 
Subject’s will indicate “I agree” or “I do not agree” in the online consent form, therefore a 
waiver of the documentation of consent is requested.   
 
4.5 Special Consent Populations 
 
A. Enrolling Minors-Subjects Who Are Not Yet Adults  
 
Parental Permission 
We will only enroll students who are 18 or older 
 
Non-Parental Permission 
N/A 
 
Assent Process 
N/A 
 
Documentation of Assent 
N/A 
 
Reaching Age of Majority During Study 
N/A 
 
B. Enrolling Wards of the State 
N/A 
 
Research Outside of NJ Involving Minors 
N/A 
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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C. Enrolling Non-English-Speaking Subjects 
N/A 
 
Process for Non-English-Speaking Subjects 
N/A 
 
Short Form Consent for Non-English Speakers 
N/A 
 
D. Enrolling Adults Lacking Decision-Making Capacity (Surrogate Consent) 
N/A  
 
Assessing Adult Capacity to Consent 
N/A 
 
Selecting a Surrogate & Consent Process 
N/A 
 
Subject Assent 
N/A 
 
Selecting a Witness to the Surrogate Consent Process  
N/A 
 
Removing a Subject 
N/A 
 
E. Special Consent Considerations 
The following steps will be taken to ensure that students do not feel coerced by faculty to 
participate in the research: 
a. Students will be offered alternate assignments to participation in research, thus not 
participating will not affect their course grade. 
b. Students will be able to select participation based on the study title and brief study 
description. Thus, they can elect not to participate in this specific study. 
c. Language has been added to the consent form explaining that participation is 
voluntary and that deciding to take part in the study or withdrawing will not impact 
their standing in their psychology courses.  
 
4.6 Economic Burden and/or Compensation for Subjects 
 
A. Expenses  
Participants will not incur any direct or indirect costs because of their participation in the study. 
 
B. Compensation/Incentives 
Participants will not receive any direct or indirect compensation or incentives for participation in 
this study. 
 
C Compensation Documentation 
N/A 
. 
  
4.7 Risks of Harm/Potential for Benefits to Subjects 
 
A. Description of Risks of Harm to Subjects 
 
Reasonably Foreseeable Risks of Harm 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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The foreseeable risks associated with participating in this study are due to the study content 
being related to cancer and other blood-based conditions.  Participants may find it distressing 
to read about a child with cancer in need of a bone marrow transplant.   
 
Risk of Harm from an Intervention on a Subject with an Existing Condition 
There are no documented risks to participation in this type of study. 
 
Other Foreseeable Risks of Harm 
Participation will be kept confidential and anonymous.  Researchers will not have access to 
study names or identifying information.   
 
Observation and Sensitive Information 
N/A 
B. Procedures which Risk Harm to Embryo, Fetus, and/or Pregnant Subjects 
N/A 
C. Risks of Harm to Non-Subjects 
N/A 
D. Assessment of Social Behavior Considerations 
N/A 
E. Minimizing Risks of Harm 
Participants will be told the purpose of the study before consent, including that we are trying to 
learn about what motivates individuals to donate bone marrow/stem cells for patients with cancer 
and blood-based health conditions.  Should they be uncomfortable with this study content they 
can elect not to participate.  Further, should participants become uncomfortable while answering 
any questions or while reading about the reasons patients need a transplant, they can skip 
questions or stop participation at any time. Finally, participants will be provided with the principal 
investigator’s contact information should they need to discuss the study content further. 
 
Certificate of Confidentiality 
N/A 
 
Provisions to Protect the Privacy Interests of Subjects 
N/A 
 
F. Potential Direct Benefits to Subjects 
There are no direct benefits for participating in the study, although their participation may help 
increase diverse enrollment in the NMDP in the future.   
 
5.0 Special Considerations 
 
5.1 Health Insurance Portability and Accountability Act (HIPAA) 
N/A 
5.2 Family Educational Rights and Privacy Act (FERPA) 
N/A 
 
5.3 Code of Federal Regulations Title 45 Part 46 (Vulnerable Populations) 
Rutgers-Camden undergraduate students will be enrolled and the study and a considered a 
vulnerable population because of the potential for students to feel coerced by faculty and instructional 
staff. 
A. Special Populations 
Following the procedures for using students as subjects in the Rutgers Research HSPP the following 
steps will be taken to reduce the possibility for students to feel coerced into participation.  
 
 
1) The Principal Investigator teaches one section of Method and Theory but will not recruit in 
class. Students will be given the opportunity to select which studies they would like to 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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participate in and will not be penalized in any way for participating or not participating in this 
specific study. 
2) Students in the Psychology Subject Pool will be given an alternate assignment should they 
elect to not participate in research.  
3) Students’ grades will not be impacted if they do not consent to participation or if they choose 
to withdraw from the study. This will be explained to students as part of the consent process. 
 
5.4 General Data Protection Regulation (GDPR) 
N/A 
 
5.5 NJ Access to Medical Research Act (Surrogate Consent) 
N/A 
 
6.0 Data Management Plan 
 
6.1 Data Analysis 
Data will be analyzed using ANOVAs and multivariate linear regression models. 
 
6.2 Data Security 
Survey data will be collected using Qualtrics, a secure online platform. There will be no identifiable 
information collected within the Qualtrics system. Participation credit is assigned through a separate 
system that manages the Psychology Subject Pool (SONA) and will not be linked to participant data 
except by time stamp if needed to later assign credit.   
 
6.3 Data and Safety Monitoring 
 
A. Data/Safety Monitoring Plan 
N/A 
 
B. Data/Safety Monitoring Board Details 
N/A 
 
6.4 Reporting Results 
 
A. Individual Subjects’ Results  
N/A 
 
B. Aggregate Results 
Results of the research will be made available to participants upon request. All results will be 
presented on the sample. No individual results will be shared or published. 
 
C. Professional Reporting 
The research team will publish results and present them at academic conferences.  The findings 
may also inform future studies regarding participation in the NMDP.   
 
D. Clinical Trials Registration, Results Reporting and Consent Posting 
This trial will be registered with ClinicalTrials.gov. 
 
6.5 Secondary Use of the Data    
Any data published in papers and/or presentations will be made available to researchers upon 
request. Data will not contain identifiers.  
 

 
 
 
 
Protocol Title: Motivations for Transplant Registry Participation  
PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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7.0 Research Repositories – Specimens and/or Data 
 
N/A 
 
 
8.0 Approvals/Authorizations 
 
N/A 
 
9.0 Bibliography 
 
 
Billen, A., Madrigal, J. A., Scior, K., Shaw, B. E., & Strydom, A. (2017). Donation of peripheral blood stem 
cells to unrelated strangers: A thematic analysis. PloS one, 12(10), e0186438. 
 
Butterworth, V. A., Simmons, R. G., Bartsch, G., Randall, B., Schimmel, M., & Stroncek, D. F. (1993). 
Psychosocial effects of unrelated bone marrow donation: experiences of the National Marrow Donor 
Program. 
 
Crowne, Douglas & Marlowe, David. (1960). A New Scale of Social Desirability Independent of 
Psychopathology. Journal of consulting psychology. 24. 349-54. 10.1037/h0047358. 
 
Fingrut, W., Parmar, S., Cuperfain, A., Rikhraj, K., Charman, E., Ptak, E., ... & Messner, H. (2017). The 
Stem Cell Club: a model for unrelated stem cell donor recruitment. Transfusion, 57(12), 2928-2936. 
 
Gardner, Paul. (1987). Measuring ambivalence to science. Journal of Research in Science Teaching. 24. 
241 - 247. 10.1002/tea.3660240305. 
 
Kaster, E. C., Rogers, C. R., Jeon, K. C., & Rosen, B. (2014). Getting to the heart of being the match: a 
qualitative analysis of bone marrow donor recruitment and retention among college students. Health 
Educator: Journal of Eta Sigma Gamma, 46(1), 14. 
 
Monaghan, M., Yi, Q. L., Green, M., Campbell, T., Weiss, J. T., Dibdin, N., ... & Allan, D. S. (2021). 
Factors associated with registrant availability for unrelated adult donor hematopoietic stem cell donation: 
Analysis of the stem cell registry at Canadian Blood Services. Transfusion, 61(1), 24-28. 
 
Narayanan, P., Wolanskyj, A., Ehlers, S. L., Litzow, M. R., Patnaik, M. S., Hogan, W. J., & Hashmi, S. K. 
(2016). Medical students' knowledge, familiarity, and attitudes towards hematopoietic stem cell donation: 
stem cell donation behaviors. Biology of Blood and Marrow Transplantation, 22(9), 1710-1716. 
 
National Marrow Donor Program (2013).  Key Figures and Facts. www.bethematch.com  
 
Onitilo, A. A., Lin, Y. H., Okonofua, E. C., Afrin, L. B., Ariail, J., & Tilley, B. C. (2004, December). Race, 
education, and knowledge of bone marrow registry: indicators of willingness to donate bone marrow 
among African Americans and Caucasians. In Transplantation proceedings (Vol. 36, No. 10, pp. 3212-
3219). Elsevier. 
 
Rose, A., Peters, N., Shea, J. A., & Armstrong, K. (2004). Development and testing of the health care 
system distrust scale. Journal of general internal medicine, 19(1), 57–63. https://doi.org/10.1111/j.1525-
1497.2004.21146.x 
 
Rosenberg, M. (1965). Rosenberg self-esteem scale. Journal of Religion and Health. 

 
 
 
 
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PI: Lauren Daniel 
Protocol Version Date: 6.8.23 
 
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Rushton, J. P., Chrisjohn, R. D., & Fekken, G. C. (1981). The altruistic personality and the self-report 
altruism scale. Personality and individual differences, 2(4), 293-302. 
 
Surana, P. K., & Lomas, T. (2014). The power of charity: Does giving away money improve the wellbeing 
of the donor. Indian Journal of Positive Psychology, 5(3), 223-230. 
 
Studts, J. L., Ruberg, J. L., Mcguffin, S. A., & Roetzer, L. M. (2010). Decisions to register for the National 
Marrow Donor Program: rational vs emotional appeals. Bone marrow transplantation, 45(3), 422-428. 
 
Vasconcellos, A., & Edward Feller, M. D. (2011). Knowledge, attitudes, and behaviors regarding the bone 
marrow registry among college and medical students in Rhode Island. Rhode Island Medical 
Journal, 94(10), 302. 
 
Vekaria, K. M., Hammell, A. E., Vincent, L., Smith, M., Rogers, T., Switzer, G. E., & Marsh, A. A. (2020). 
The role of prospection in altruistic bone marrow donation decisions. Health Psychology, 39(4), 316.