Information for Group Participants

1. What is the Mind Body Resiliency Data Repository?

Patients in the Mind Body Resiliency Clinical Groups are asked to complete two optional surveys at their group start and group end. Information and data collected from these surveys are stored in a secure online data repository called Research Electronic Data Capture (REDCap). The purpose of this repository is to review responses from program patients to inform future mind body research and clinical program refinement to improve the care of patients in these programs!

2. How will my privacy be protected?

Data is analyzed in aggregate to inform future mind body research. Researchers and clinicians will not be able to view your identifiable information or individual answers. Under the Health Insurance Portability and Accountability Act (HIPAA), and oversight from the Mass General Brigham Institutional Review Board, we are required to protect the privacy of health information obtained for research.

3. How long does each survey take?  

Each survey takes approximately 20-30 minutes to complete and may be completed in multiple sittings (e.g., you may return to a survey if left incomplete).

4. How do I access the surveys?

Upon group registration, a personalized survey link will be sent to your provided email address. You can access the survey on your smartphone, tablet, or computer. Surveys are administered in English.

5. What kind of questions should I expect to be asked?

You can expect to be asked questions related to quality of life. This includes questions aimed at measuring the following constructs: health behaviors (e.g., healthy eating, physical activity, sleep quality), resiliency, social support, emotions, and mindfulness. No answers are required; you may skip over questions if you are uncomfortable providing an answer.

6. How might I benefit from completing these surveys?

Many patients opt to complete these surveys, knowing that their answers will contribute to advances in mind body research and help to improve the quality of our programs for future participants.

Information for Researchers and Collaborators

1. What is the Mind Body Resiliency Data Repository?

The purpose of the Mind Body Resiliency Data Repository is to provide a centralized data warehouse that will make the research and clinical data collected from participants in clinical resiliency programs. Surveys are optional and collected electronically via REDCap; participants may choose to voluntarily to answer the baseline survey(T0) and/or the post-program survey (T1).

Typically, participants in these programs are individuals dealing with an ongoing stressor and/or chronic illness. Participants include adult and young adult cancer survivors, relatives of children with learning and attentional disabilities, and women with HIV. Data collected may relate to, or reflect, participant quality of life, such as data regarding engagement in health behaviors (e.g., healthy eating, physical activity, sleep quality), resiliency, social support, emotional distress, positive affect, and mindfulness. 

The data repository is a resource to standardize and streamline the collection, management and analysis of this data from these clinical and research projects, thus facilitating the secondary analysis of data to answer new scientific questions. 

2. Data Requests

You may request our request form for a comprehensive list of current and former measures in our survey battery.  Please choose and download the appropriate form for (a) general Mind Body Resiliency Repository data requests, or (b) Cancer Survivorship repository data requests:

For general questions about data requests, please email Autumn Rasmussen (

To submit a proposal, please email Daniel Hall, PhD (

3. Background Literature Related to the Mind Body Resiliency Data Repository

4. Mind Body Resiliency Survey Battery

These voluntary surveys take approximately 30 minutes to complete and are administred to participants in our Mind Body Resiliency Groups at program start and end. Below is a list of our current survey battery, including dates of collection. Questions about any instruments listed below, or any instruments previously used in our repository, can be routed to Daniel Hall, PhD (

Instrument ConstructValidation PaperDates of Collection
Demographics Patient Demographics n/a9/20/16 – Present
Medical History Patient Medical History n/a3/17/23 – Present
Current Experiences Scale (CES) ResiliencyPark, et al. (2021) 9/20/16 – Present
1-11 Distress ScaleEmotional Distress n/a9/20/16 – Present
Measure of Current Status (MOCS)Stress Coping Carver, C. S. (2006)9/20/16 – Present
PANAS (Positive Affect) Positive EmotionsThompson, E.R. (2007)9/20/16 – Present
Penn State Worry Questionnaire (PSWQ)Worry Meyer, et al. (1990)9/20/16 – Present
International Physical Activity Questionnaire (IPAQ)Physical Activity Craig, et al. (2003)9/20/16 – Present
Insomnia Severity Index (ISI)Recuperative Sleep Kraepelein, et al. (2021)8/30/22 – Present
Pittsburg Sleep Quality Index (PSQI)Recuperative Sleep Buysse, et al. (1989)9/20/16 – Present
PSS-10Perceived Stress Cohen & Williamson (1988)9/20/16 – Present
CAMS-RMindfulnessFeldman, et al. (2007)9/20/16 – Present
PHQ-4Depression and Anxiety Lowe, et al. (2010)9/20/16 – Present
Fatigue Analogue Scale Fatigue n/a9/20/16 – Present
Cigna Healthy Eating Mindful Eating n/a9/20/16 – Present
RR Adherence Relaxation Practice Frequency n/a7/21/21 – Present
MOS Social Support (Emotional Support Scale) Social Support Sherbourne & Stewart (1991)9/20/16 – Present
TFEQ Emotional Eating Subscale Healthy Eating Stunkard & Messick (1985)7/21/21 – Present
RIA Single ItemRelaxation-induced Anxietyn/a7/21/21 – Present
Health Uncertainty Health Uncertainty n/a9/20/16 – Present
Flourishing Measure Flourishing Węziak-Białowolska, et al. (2019)7/21/21 – Present
WHO-5 Wellbeing Index Wellbeing Topp, et al. (2015)7/21/21 – Present
Appreciation Items Apprecation n/a7/21/21 – Present
Religiosity and Spirituality Items Religiosity and Spirituality n/a7/21/21 – Present
UCLA Loneliness Scale Loneliness Russell, et al. (1980) 9/20/16 – Present
Smoking Question Tobacco Use n/a7/21/21 – Present
Expectancy Questionnaire Expected Outcomes Devilly & Borkovec (2000)9/20/16 – Present
Program Satisfaction Program Acceptability n/a3/17/23 – Present
Last updated 4.13.23