PRE-RA Family Study

National Institute of Health, 2011S000892 (E. Karlson, PI)

Principal Investigator: Elizabeth Karlson

Duration: 

Many family members of people with rheumatoid arthritis (RA) wonder if they are at risk for developing RA. The PRE-RA Family Study is creating an online tool (called the "Personalized Risk Estimator for Rheumatoid Arthritis", or "PRE-RA") to help family members understand and reduce their risk of RA. Our research team, led by Elizabeth Karlson, MD, will enroll 100 people who are at risk of developing RA. This increased risk is related to having a blood relative with RA. Gathering information about who is at risk for RA will be helpful in identifying effective ways to check for or prevent this disease.

The study is enrolling adults between the ages of 18-70 who are first-degree family members of a person with RA. As part of the study, participants are asked to answer some questions about their lifestyle and health behaviors. For some participants, a blood sample will be drawn from their arm, which will be tested for protein and genetic markers. This information will help the team to create an accurate, easy-to-use computer tool to help people at risk of developing RA understand their risk.

Dr. Green's Role: (Consultant) Advising on study design and implementation, with a focus on genetic risk communication.

 

To learn more about Dr. Karlson's work, please visit Brigham and Women's Hospital

Returning Research Results in Children: Parental Preferences and Expert Oversight

National Human Genome Research Institute, R01-HG006615 (I. Holm, PI)

Principal Investigator: Ingrid Holm

Duration: 2011-2015

 

Project Goal: The goal of this project is to examine the opinions and choices of parents whose children are enrolled in a research biobank with regard to return of research results. 

 

Dr. Green's Role: (Co-Investigator): To assist the PI in all aspects of planning, implementation and production of publications.

 

To learn more about Dr. Holm's work, please visit Boston Children's Hospital.

Causal Transcriptional Consequences of Human Genetic Variation

Renewal of P50 HG003170

Principal Investigator: George Church

Duration: 2010-2015

 

Project Goal: Renewal of a currently funded Center for Excellence in Genome Science at Harvard Medical School.

 

Dr. Green’s Role: (Consultant) Advise the CEGS on components of the grant involving human subjects research and assist in the training component, particularly the Minority Action Plan.  Specifically, my role is to assist in designing outcomes to measure the success of recruitment, inspiration and education of trainees.

 

To learn more about Dr. Church's work, please visit the Department of Genetics at Harvard Medical School.

Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI Experiment; Managing Incidental Findings and Research Results in Genomic Biobanks and Archives

National Cancer Institute, R01-CA154517

Principal Investigator: Susan Wolf

Duration: 2011-2016

 

Managing Incidental Findings

National Human Genome Research Institute, R01-HG003178

Principal Investigator: Susan Wolf

Duration: 2009-2012

 

Projects’ Goal: To develop consensus on the issue of whether and how to return medically relevant information discovered incidentally during genetic analyses in large cancer biobanks.

 

Dr. Green’s Role: (Consultant) Assist the PI in all aspects of planning, implementation and production of publications; serve as an active member of the working group

 

To learn more about Dr. Wolf's work, please visit the University of Minnesota Law.

ADNI: The Alzheimer’s Disease Neuroimaging Initiative

Principal Investigator: Michael W. Weiner

Duration: 2004-2016

The Alzheimer’s Disease Neuroimaging Initiative (ADNI) was launched in 2004 by the National Institute on Aging (NIA), the National Institute of Biomedical Imaging and Bioengineering (NIBIB), the Food and Drug Administration (FDA), private pharmaceutical companies and non-profit organizations as a 5-year public-private partnership. The primary goal of ADNI has been to test whether serial magnetic resonance imaging (MRI), positron emission tomography (PET), other biological markers, and clinical and neuropsychological assessment can be combined to measure the progression of mild cognitive impairment (MCI) and early Alzheimer’s disease (AD). Determination of sensitive and specific markers of very early AD progression is intended to aid researchers and clinicians to develop new treatments and monitor their effectiveness, as well as lessen the time and cost of clinical trials.

 

Sharing ADNI data with the general scientific community is an objective that was established from the onset of the study and is supported by the ADNI Executive Committee and representatives of the NIA. The ADNI Executive Committee created and charged the ADNI Data and Publications Committee (ADNI DPC) (Dr. Robert C. Green, Committee Chair) with the task of establishing policies to implement this requirement, as well as recommend procedures for dealing with acknowledgement issues. The ADNI DPC oversees the submission of and tracks all publications that involve ADNI data. Authors are required to submit manuscripts to the ADNI DPC prior to submitting them for peer review and publication. The DPC is responsible for reviewing each manuscript for both quality and compliance with the ADNI Data Use Agreement.

 

Further inquiries regarding the ADNI Study or the ADNI DPC may be directed to Dr. WeinerDr. Green or Erin Drake, Director of Research Operations, G2P.

 

To learn more about ADNI PI Dr. Weiner's work, please visit the Center for Imaging of Neurodegenerative Diseases.