Search Results
Site for Large scale genome sequencing and integrative analyses to define genomic predictors of recurrent pregnancy loss
The purpose of this study is to find genetic causes of recurrent pregnancy loss (RPL). RPL is defined by two or more miscarriages under 20 weeks gestation and affects approximately 5% of women. The causes of RPL are not well understood. After all the currently recommended testing for RPL has been done, about half of women with RPL will still have no identifiable cause. This lack of knowledge makes it difficult to provide effective medical care for couples with RPL. This study will compare reading about 20000 genes in the entire human genetic library by whole genome sequencing in the miscarriage material and also your and your partner’s DNA from blood samples. The DNA in a person is a combination of the DNA from each of their biological parents. If you have healthy children we may ask your consent for them to give a blood sample for DNA extraction and testing. Similarly, we may ask the same for other family members such as grandparents if necessary. We may also request your permission to use stored DNA or miscarriage material from previous pregnancy loss if available. Testing of family members or previous miscarriage materials may help to understand DNA sequence variants or changes identified in the miscarriage sample.
There will be a one time collection of blood samples.
Two or more prior losses of clinically recognized pregnancies
Prior losses are unexplained
Personalized assessment of daily experiences
The purpose of this voluntary research study is to understand how experiences that might change moment-to-moment influence suicidal thoughts and behaviors for individual people. In other words, the purpose of this research is to understand how much the experiences that lead to suicidal thoughts and behaviors might differ from person to person. We are including people living in rural municipalities in this research because people living in rural areas are not often represented in suicide research, even though suicidal thoughts and behaviors are important issues for people in rural communities. We want to make sure that we understand how suicidal thoughts and behaviors might develop specifically for individual people living in rural areas. We also want to understand how suicidal thoughts and behaviors develop specifically for people in the LGBTQIA+ community who live in rural areas.
First, you will complete surveys at a baseline assessment. Second, following the baseline assessment, you will be asked to complete short assessments of your mood, thoughts, and behaviors, 5 times per day for 21 days. Each assessment should take less than 2 minutes to complete. Third, at the end of the 21-day period, you will provide feedback on your experience rating your mood, thoughts, and behaviors. Fourth, you will complete 12 brief weekly assessments. Fifth, you will complete surveys four months after completing the baseline assessment.
$300
own a smartphone with internet and email access
English language fluency
Lifetime suicide attempt with past-year suicidal ideation or a suicide plan or suicide intent within the last 12 months
Lives in a rural borough/township
mania
psychosis
Biologic and Environmental Impacts on Neurodevelopment and Growth (BEING)
Examine associations between biologic factors (genetic, epigenetic, transcriptomic, metabolomic) and environmental factors (family psychosocial dynamics, environmental allergens, diet, microbiome) in developing children, and their relationship with health and disease over the lifespan.
Depending on the age your child is when they are enrolled into the study will determine their designated enrollment group (Cohort 1, Cohort 2, Cohort 3, or Cohort 4) to determine how many study visits are required to complete participation in the study. For Cohort 1 participants (for infants enrolled at age 5-50 days): -9 study visits total -Each study visit includes surveys that assess your child's growth and development that you can complete via your email -Each study visit includes at minimum a saliva swab sample **Infants will be asked to collect a stool sample for 3 study visits -Optional mother participant for breast-feeding mothers who will agree to provide a small breast milk sample for 3 study visits. For Cohort 2 participants (for children enrolled at age ~24 months): -6 study visits total -Each study visit includes surveys that assess your child's growth and development that you can complete via your email -Each study visit includes a saliva swab sample **Children will be asked to collect a stool sample for 1 study visit For Cohort 3 participants (for children enrolled at age 5-7 years): -4 study visits total -Each study visit includes surveys that assess your child's growth and development that you can complete via your email -Each study visit includes a saliva swab sample For Cohort 4 participants (for children enrolled at age 12-14 years): -2 study visits total -Each study visit includes surveys that assess your child's growth and development that you can complete via your email -Each study visit includes a saliva swab sample
20-100
Fluent in spoken/written English
Parent or legal guardian 18+ years old
Child ages: 5-50 days old, 2 years old, 5-7 years old, and 12-14 years old
Non-english speaking
Parent or legal guardian with decisional impairment
Site for Strong Foundations: Intervening to Promote Co-Parenting in Expectant Parents and Healthy Child Development.
Our goal is to examine the efficacy of Strong Family Foundations parenting classes in reducing couple conflict, promoting co-parenting quality, parental sensitivity, and child development outcomes within families. We hope to enroll 220 couples in our parenting program. Participants will participate in parenting classes before and after the birth of their child, and research assessments 6 and 12 months postpartum.
Couples will be asked to participate in online parenting classes and family assessments during and after pregnancy. There are 3-5 prenatal and 1-4 postnatal classes that take place over Zoom. Family are also asked tp participate in 3 family assessments: 1 during pregnancy, 1 at 6 months of infant age, and one at 12 months of infant age. Families will be asked to complete inline surveys before each assessment. Additionally, families are asked to submit hair and saliva samples.
425.00
First time parents
18 years of age or above
English speaking
Both parents living together
Not pregnant with first child
Parents not living together
Health Apps to Mitigate COVID-19 Risk Survey
With the COVID-19 pandemic affecting everyone’s daily routine, our lives have changed drastically. The health of ourselves, families, friends, and communities is our biggest concern and finding a cure to this problem is still underway The purpose of this survey is to analyze how people are taking control of their health using various health applications forms.
Invisible Sojourners: Second Language Socialization Among International Spouses
This study will examine how international spouses improve their English ability and form connections with the local community. Participants will be interviewed to learn about their experiences. Social events that are found to be positive will be recorded so that the interactions in that space can be analyzed to determine how they help international spouses.
Understands spoken English
Developing a Recommendation System for Local Community Events
In this study, we investigate a recommender system for public, local events in Centre County, PA. Currently, there is no platform that aggregates all the events that take place in a community. The data is fragmented among many platforms and it can be difficult for people to find interesting things to do. Participants will interact with our software system and discuss their experiences through a survey and/or interview.
Must be a University Park student or local resident of Centre County
Persons who do not live in Centre County, PA
Pennsylvania Adoptees Longitudinal Study (PALS)
This study will examine various factors within the home of children adopted from the child welfare system between the ages of 4 and 10 that may impact their development. The first visit will occur via Penn State Health Zoom; the second visit is optional will occur within 4 weeks of the first visit at the Transforming Lives of Children Center in Harrisburg, PA; and the third visit will occur one year after the first visit, when research staff will travel to participants' homes. This research will help understand the factors that impact the development of children adopted from the child welfare system and how we may better serve these children and their families.
The child and parent will be asked to complete interviews, questionnaires and various tasks. Parents may also be asked to complete questionnaires online. Participation will last for one year and include the following: -One visit occurring remotely via PSH Zoom -One visit at the Transforming the Lives of Children Center in Harrisburg, PA, four weeks after Zoom visit (optional) -Final visit at home will occur one year after the first Zoom visit
$225
Child legally adopted by the caregiver
The same caregiver will participate in each of the visits
A legally adoptive caregiver is a biological relative of the child
Minoritization and transnational social hierarchies: Caste and race in the Indian immigrant context
The study looks to understand how caste and race play out among Indian students, especially Indian immigrant students. Caste is the predominant social category in India. However, as Indian students migrate into to the USA, the social category of race is introduced and social category of caste is not understood outside of the Indian community. Through qualitative interviewing, it is aimed in this study to determine how migrating to the USA and becoming a minority and a person of color can potentially change how Indians view caste and caste identities in India. The primary hypothesis of the study is that the process of becoming becoming a minority through immigration can be used to think back on caste, and to think forward on race in both India and the USA.
Citizen/Resident of India for at least 5 years OR one or both parents have been citizens of India for at least 5 years
Students/Faculty members at Penn State
Subjects who do not speak English
Expanding Family Foundations to 2nd-Time Parenthood - Focus Group
This focus group study, funded by Penn State's Social Science Research Institute, brings together couples with preschool-aged firstborns who are pregnant with their 2nd child or who have given birth to their 2nd child within the last 12 months. Couples will be interviewed about how they worked together as a team (as coparents) to prepare their firstborn for the birth of the second child and to prepare themselves for 2nd-time parenthood.
2. Each caregiver is over 18 years of age.
3. Caregivers are living together in the same household and are either married or living with a partner.
4. Families living independent of parents’ families of origin.
5. Both caregivers fluent in communicating in English.
2. Caregivers are under 18 years of age.
3. Caregivers not living together
4. Caregivers not living independently of their families of origin
5. Single-parent families with no live-in partner.
The effectiveness of a community-based steps challenge on cardiovascular health outcomes in adults
The purpose of this study is to determine the effect of Blair County’s Active Living Steps Challenge on cardiovascular health in adults participating in the intervention compared to a control group of adults also living in Blair county who are not participating in the Steps Challenge.
Ages 18-65 years old
Currently living and/or working in Blair County, Pennsylvania
Ability to walk for >10 minutes at a time
Conditions associated with cognitive impairment or medical instability that puts the subject at risk
Signs or symptoms suggestive of cardiovascular, metabolic, or renal disease
Females currently pregnant or breastfeeding
Currently involved in a program to gain or lose weight
Fam Best Study
The purpose of this research study is to understand how caregivers communicate with teenagers through the ups and downs of daily life. We would like to know how caregivers and teens in a modern family act around each other, and how family communication affects well being. The study is conducted all online (e.g., video chats and surveys on phones).
Parent-teen pairs will be asked to do the following: 1. A 2-hour baseline Zoom appointment 2. Brief 1-2 minute long surveys throughout the day for one to two weeks 3. Provide brief video recordings of their interactions during car rides over the one to two week period 4. Carry study-provided smartphones with them at all times when not at school 5. A 30-minute follow-up Zoom appointment
$100 per person
Parent and youth live together at least 5 days/week
Parent has an active driver's license
Family has car that they use regularly
Primary language spoken at home is English
Youth has developmental disability (Autism spectrum disorders)
Youth or parent has had a suicide attempt, or intensive care (inpatient, partial hospitalization, daily outpatient) care for emotional or behavior problems in the past 12-months
Other social (ex: homelessness) or medical conditions that make participation difficult
Adults with Autism Spectrum Disorder Living in Rural Communities: Pilot of Acceptability and Feasibility of Assessment of Community Participation using Smartphone Technology
This research study aims to test the acceptability and feasibility of passive data collection and ecological momentary assessments (EMA) using smartphone and wearable technologies by adults with autism spectrum disorder (ASD) living in rural areas.
Primary diagnosis of Autism Spectrum Disorder (ASD)
English as a primary language
Ability to self-report, read & comprehend assessments written at a third grade reading level
Living in a rural county or non-urban municipality in Pennsylvania
Inability to provide consent and self-report
Residing in an urban area
Using Serious Game Technology to Improve Social Skills in Autism
The goal of this study is to help ASD adolescents improve social skills during face-to-face interactions. We have designed an immersive computer game to help them learn these skills in a fun way. Adolescents play the game at home 3 times a week for 3 months on a computer that we give you. In order to see how well the game is working to teach them, we have to test it against another game that is similar but teaches other skills. We measure your adolescent’s attention in the lab through computer games and by measuring their eye movements. We invite you to answer questions about their social behavior. We are flexible in how we work with families to accommodate busy schedules (e.g., weekend appointments). Families come to Penn State for three visits. We pay for all travel expenses (mileage, toll, hotel). Families are also compensated up to $450 for their time.
Pending full eligibility, there are 3 in-person visits to the lab spaced 3 months apart from each other. Completing the entire procedure will take slightly more than 6 months. Between the first and second visit, participants will play a version of our game at home 3 times a week for 3 months.
$440 (one remote visit, three in-person visits, and at-home gameplay time)
autism spectrum disorder
corrected vision and hearing at normal levels
can speak in full sentences
stable internet connection in the home
non-native English speaker
Evaluating the effectiveness of live, one-on-one musical performances on alleviating loneliness in older people
This will be a randomized controlled study to evaluate the effectiveness of live, one-on-one zoom musical performances on alleviating loneliness in older people (55 years and older) living in the Hershey, PA community. After identification of at-risk individuals, I would like to introduce live, interactive music interventions to half of the identified individuals through zoom. The other half will not receive the music intervention until the end of the study. We are planning to recruit 50 participants, allowing for 25 participants each for the experimental and control group. Loneliness scores measured before, during and after the study will be compared using the UCLA Loneliness Scale.
This project involves participating once a week in a 30-minute live music session through zoom and taking a survey regarding your feelings of loneliness. This is a randomized control study, which means that you will be randomly placed in a control group or experimental group. The experimental group will participate in music sessions once a week for 8 weeks, whereas the control group will not receive the music intervention until after 8 weeks.
Able to hear, speak, read and write in English
Able to give written consent
Are not currently hospitalized
Score a 6 or higher on a study loneliness questionaire
Brain Mechanisms of Overeating in Children
Reducing intake from large portions is of critical importance to preventing obesity. People consistently eat more when they are served larger portions, a phenomenon known as the portion size effect. The mechanisms of the portion size effect are not well understood, and investigating the underlying neurobiology that drives this phenomenon may inform the development of more effective obesity prevention programs. The proposed research will follow healthy weight children who vary by family risk for obesity to identify the neurobiological and appetitive traits that are implicated in overeating and weight gain during the critical pre-adolescent period. We expect results to confirm the hypothesis that reduced function of brain inhibitory pathways and increased activity in brain reward pathways in response to portion size cues contributes to excess intake with large portions and greater weight gain over time, particularly in children who have higher risk for obesity. The proposed studies will characterize the relationship between brain response to portion size and eating behavior and will allow us to determine whether brain and behavioral responses predict body fat gain during pre-adolescence. These studies will contribute essential information to our understanding of the pathways implicated in overeating and obesity and will facilitate the characterization of “at risk” phenotypes that can be targeted by prevention programs.
There will be seven in person visits with two DEXA measurements, one fMRI scan and five meals.
$350
The child must not have any food allergies to foods used in the study, learning disabilities, psychological diagnoses, red/green color blindness, or claustrophobia.
The child must not be taking any medications known to influence cognitive function, taste, appetite or blood flow
The child's BMI must be below the 90th percentile at the first visit
The biological mother and father must have a BMI between 18.5-25 kg/m2 (low-risk group) or greater than or equal to 30 kg/m2 for mothers and greater than or equal to 25 kg/m2 for fathers (high-risk group) and 1 parent must attend all visits.
Children will be excluded if they have any food allergies, learning disabilities, psychological diagnoses, red/green color blindness, or claustrophobia
Children will be excluded if they are taking cold or allergy medication, or other medications known to influence cognitive function, taste, appetite, or blood flow
Children will be excluded if their BMI is above the 90th percentile at the first visit
Families will be excluded if the biological mother or father do not fit the BMI requirements
Pilot Study to Assess Medication Adherence, Health Literacy, and Technological Literacy among African Americans and Latinos with Hypertension
This pilot study aims explore the health literacy and medication adherence found among African Americans and Latinos with hypertension receiving care at Hamilton Health Center in Harrisburg PA. We also aim to determine the feasibility of the iPad or smartphone as a tool for accessing health related information among African American and Latino patients with hypertension receiving care at clinics at Hamilton Health Center in Harrisburg PA. The expected outcomes of this project are to obtain a better understand of the literacy levels and adherence behaviors of African Americans and Latinos in Harrisburg, Pennsylvania. The findings from this study will provide valuable insights into the health management behaviors of this community and determine if there is a need to develop a mobile health application for the management of hypertension.
Prescribed medication for high blood pressure
African American/Black (Hispanic or Non-Hispanic) or White (Hispanic)
21 years and older
Able to speak and read English
The Impact of Menstrual Cup Distribution Programming on College Student Perpetuation of Period Stigma
This is a social sciences study to analyze the effect of menstrual cup introduction through the "CampusCup" free menstrual cup distribution program on the tendency of college students to perpetuate period stigma. A survey will be conducted across samples of students who participated in the CampusCup program, students who use menstrual cups independent of the CampusCup program, and students who have never used menstrual cups. The survey will address motivations behind menstrual cup usage and personal attitudes towards periods. The study seeks to investigate relationships between menstrual cup usage & CampusCup participation and impacts on community attitudes towards menstruation.
At least 18 years of age
Has experienced a menstrual period in the last calendar year
Less than 18 year of age
Has not experienced a menstrual period in the last calendar year
One Penn State : Connecting a Learning Community of Geographically Diverse Students
The community of remote learners is on the rise. With the trends of application and skill based knowledge, more and more people are migrating to the learn while you work paradigm. People value flexibility and comfort increasingly. Penn State is one of the few Universities propagating the cause of spreading knowledge via all modalities. The 33,302 students spread across its 19 commonwealth campuses are further a testimony to the prevalent trends. It is important that all these students receive an integrated and cohesive student experience. This also covers the need for the students to feel a sense of social belongingness. The work will focus on bringing together the Penn State community to achieve the true essence of it’s chant WeAre!
Must be a student of Penn State
Dining with Diabetes in Pennsylvania
Penn State Extension's Dining with Diabetes program is an evidence-based community education program for people with or at risk for type 2 diabetes. The program teaches participants how to prevent or manage their disease by providing practical knowledge and strategies to make the necessary lifestyle changes that will lead to healthier living and reduction in the risk of complications. The overall goals and objectives of the program are as follows: Increasing knowledge of healthy food choices for families with or at risk for diabetes Promoting behavior changes by offering demonstrations and tasting of healthy food. Increasing knowledge of essential medical tests associated with diabetes management. Promoting physical activity as a component of diabetes control. Encouraging self-management and self-efficacy skill. Connecting participants to their healthcare providers for long-term follow-up. The program is designed to meet 4 consecutive weeks and then a 3 month follow-up. Classes consist of a nutrition lesson, physical activity, cooking demonstration and food tasting.
individuals with pre-diabetes
individuals at risk of developing type 2 diabetes
healthy family members/caretakers
healthy volunteers
Fam Best Study (NIH)
The purpose of this research study is to understand how caregivers communicate with teenagers through the ups and downs of daily life. We would like to know how caregivers and teens in a modern family act around each other, and how family communication affects well being. The study is conducted all online (e.g., video chats and surveys on phones).
Mother-teen pairs will be asked to do the following: 1. A 2-hour baseline Zoom appointment 2. Brief 1-2 minute long surveys throughout the day for two weeks 3. Provide brief video recordings of their interactions during car rides over the two week period 4. Carry study-provided smartphones with them at all times when not at school 5. A 30-minute follow-up Zoom appointment
$160/person
Parent and youth live together at least 5 days/week
Parent has an active driver's license
Family has car that they use regularly
Primary language spoken at home is English
Youth has developmental disability (Autism spectrum disorders)
Youth or parent has had a suicide attempt, or intensive care (inpatient, partial hospitalization, daily outpatient) care for emotional or behavior problems in the past 12-months
Other social (ex: homelessness) or medical conditions that make participation difficult
Centre County COVID-19 Data 4 Action Study
The purpose of this research is to evaluate the extent of COVID-19 risk and perceived risk among Centre County residents and students, and how those risks evolve from the time isolation guidelines were implemented through a return to normal functioning. Participants in this research will complete an electronic survey with questions about their demographic, about their exposure to COVID-19, and about how COVID-19 has affected their health and work/education. Data from this research will be used to inform Centre County planning authorities and the Pennsylvania State University about the needs of communities, including needs for information dissemination and for potentially actionable, local interventions in response to the COVID-19 pandemic.
Currently living in Centre County, PA.
Expect to continue living in Centre County, PA (through at least Sept 2020)
Capable of providing your own informed consent.
Communicating Queer Chinese Identities: A Qualitative Investigation of the Visibility and Intelligibility of Transnational Queer Women in the United States
In today’s climate of anti-Asian hate, we believe that it is important to uncover different aspects of what “being Chinese” could look like. To this end, we are looking for individuals who self-identify as ethnically Chinese, woman, and a member of the LGBTQIA+ community to participate in a one-time 90-minute online interview to learn about what they do in their regular, everyday life to try to show or tell others about who they are. As part of the study, we will ask interviewees to share some visual images (e.g., photos, drawings, etc.) that they own as a way of elaborating on the ways that they communicate their self-identity in everyday life.
Chinese ethnicity
Woman
Non-woman
Not Chinese ethnicity
Exploring Parental Influence in Youth Disability Sport Participation
We are conducting an online survey study for parents of children with disabilities that explores their perceptions of participation in disability sport within their communities.
has a child that is enrolled in a disability or adapted sport program
has a child between the ages of 10 and 17
does not have a child with a disability between the ages of 10 and 17
does not have a child that plays a disability or adapted sport
Understanding Information Needs and Challenges faced by International Spouses during Adjustment
The study examines ways in which technology can be designed to provide support and services to international spouses during their adjustment to a new host environment. In particular, we would like to investigate the needs of spouse’s communities, the challenges faced by this population during adjustment, and propose design implications for developing systems and services to improve their access to social services and to promote community development and civic engagement.
Individuals who hold a dependent (F-2/J-2) visa status
Age under 18
Non-dependents (F-2/J-2) visa status
Anyone who cannot consent to participate in this study
Saliva microRNA signatures in infants with wheezing associated respiratory illness
Wheezing is a common symptom of respiratory distress in infants and children. Infants who wheeze are at increased risk of being diagnosed with asthma, the most common chronic disease of childhood. This study will aims to yield an objective measure of asthma risk using molecular markers obtained from saliva. Saliva miRNA (markers used in this study) levels will be measured using HiSeq technology. Refinement and validation of this measure in future large-scale studies could allow clinicians to accurately predict for families an infant’s risk of asthma and optimize medical management to prevent future hospitalizations.
If your child has a respiratory illness you will be asked to provide a saliva sample at one clinic visit. Six months after the initial encounter, you will be asked to do complete surveys designed to be done remotely at home.
$20.00
Presence of respiratory illness symptoms (cough, congestion, shortness of breath, runny nose)
Concurrent pneumonia (bacterial lung infection) at the time of enrollment
Ongoing use of steroids (inhaled or oral)
COVID-19: Implications for Family Meals
The purpose of this study is to gather information about family meals, what they look like, and how they have changed over time since the COVID-19 pandemic. Participants will complete a confidential online survey last approximately 10-15 minutes.
Adults who live in a household with a child under the age of 18
Adult who are fluent in English
Individuals who can read and respond to written closed and open-ended survey questions electronically
Individuals who live in the United States
Individuals who do not reside in a household with a child under the age of 18
Individuals who are not fluent in English
Individuals with poor reading comprehension or are otherwise limited in their ability to read and respond to survey questions.
Individuals who do not currently live in the United States
Observations of Family Mealtime Routines
The purpose of this study is to gather information about what family mealtimes look like for families with children between the ages of 3 and 8. Families will be asked to video record their family mealtime, in addition to answer some questions and to complete some questionnaires, some about body image and dieting.
On one occasion, your family's mealtime will be recorded via Zoom. You and your family will be asked some questions and to complete some questionnaires online.
$20
Adults age 18 and older
Children, ages 3-8
Individuals fluent in English
Caregivers who are under the age of 18
Individuals who are not fluent in English
Families without at least one child age 3 to 8
Phase II, questionnaire for “BRITE Synergy: Developing and Validating a Framework for Measuring Resilience in Low-Income Housing in the Post-Pandemic World”
This study includes the questionnaire related to "BRITE Synergy: Developing and Validating a Framework for Measuring Resilience in Low-Income Housing in the Post-Pandemic World" which has been previously submitted. The objective of this part of the research is examining the extent to which energy burden linked to the use of inefficient appliance within the context of a changing climate can be a good proxy for community resilience and if the ongoing building electrification drive.
Participants will be asked to complete an online survey via a link that will be accessed.
10 random participants will receive $20 gif cards.
Subjects must be living in the US
Living outside the US
Abstract Reasoning, Decision Making and Social Judgment as Markers of Frontotemporal Lobar Degeneration (FTLD) in Midlife in Juvenile Myoclonic Epilepsy (JME)
This study will look for emerging patterns of Frontotemporal Lobar Degeneration (FTLD), an early onset dementia, in Juvenile Myoclonic Epilepsy (JME). JME is a type of epilepsy that usually begins in adolescence and is known to be associated with disturbances of higher-level reasoning, mood and personality. JME patients are often managed by family physicians, rather than epilepsy specialists; with little known about aging with JME. We think that JME patients will demonstrate a pattern of executive dysfunction that is consistent with consensus criteria for FTLD, characterized by declines in abstract reasoning, judgment, and verbal problem solving, as well as behavior. We also think that there will be an inverse relationship between apathy and conscientiousness. We plan to obtain this information by formal cognitive testing of non-demented JME patients over a period of 2 years, at 6-month intervals, to look for progression of symptoms. Loved ones/caregivers will complete informant questionnaires about patient's mood and personality at the beginning of the study and at 6 month intervals throughout the duration of the 24 month study. We will also include loved one/caregiver cognitive testing at the beginning of the study to obtain healthy information for comparison to patient's findings. Our objectives are to characterize the executive functioning profiles of JME in midlife, taking into account cognition, mood, personality, nutritional status and lifestyle. The information obtained may contribute to better care of JME patients prior to midlife and throughout the course of aging.
Visit 1 for both patient and healthy caregiver participants will involve administration of the JME Virtual Visit Protocol via PSH Zoom. Participants will have completed their REDCap questionnaires prior to the visit to the research coordinator, who will be conducting the assessment. Visit 2-5 for patient participants will involve administration of the JME Virtual Visit Protocol via PSH Zoom. JME participation consists of 5 virtual visits with the study’s research coordinator, lasting approximately two hours each, for completion of standardized tests of problem-solving, thinking, and concentration, as defined above. Caregiver healthy control participation consists of 1 virtual visit with the study’s research coordinator, lasting approximately two hours, for completion of standardized tests of problem-solving, thinking, and concentration, as defined above. Remaining participation involves completion of objective inventories providing a caregiver perspective of the patient participant’s mood and behavior at 6-month intervals, within the 24 month time frame of the study.
Primary language English
age 45 - 65
Mainstream Education
Loved one or caregiver to complete questionnaires
Cardiac conditions affecting cognition
Other medical conditions affecting cognition,e.g.,hypoglycemia
Hospitalization for major depressive disorder within the past year
No available loved one or caregiver to complete questionnaires