Clinical Research Oriented Workshop (CROW) Meeting: February 6, 2014

Present:  Marianne Burke, Sylvie Frisbie, Kairn Kelley, Rodger Kessler, Connie van Eeghen

Guest:     Diantha Howard

Start Up: RedCap is about to go through an upgrade in just a few weeks – stay tuned!

1.                  Discussion: How to use REDCap for data collection and analysis, with Kairn’s dissertation data collection process as a model for exploration

a.       REDCap is more than a survey; it is a data base that can produce outputs easily transferable to Stata and other analytical software

b.      Kairn is using a survey to collect data from parents (from paper forms) and from child subjects (directly into REDCap)

c.       An online designer automatically creates a data dictionary, while designing the survey

                                                  i.      However, the view of the data dictionary variables allows faster editing and additions, once the structure is understood

                                                ii.      A project has one data dictionary, which may support multiple forms

d.      For this project, each of 60 children will take this test twice.  The goal is to find out how much the scores changed for the left ear and (separately) the right ear. 

                                                  i.      At project setup, indicate that the study is longitudinal.  REDCap then provides repeated events. (See “Add new event” button function).  (We later decided to un-do this.)

                                                ii.      REDCap can track subject ID to connect longitudinal responses on a paired basis.

                                              iii.      The randomized ordering of the tests (the questions of which are part of the form, including all three tests) cannot be tracked by REDCap but can be identified as a field with a coded randomization order (for three tests, that can be randomized into 6 alternatives).  Although REDCap has a randomization function to assign a subject to a particular randomized alternative, it cannot change the presentation of the questions to match that alternative.

                                              iv.      The first form in the project should always be the subject identification variables, such as age, gender, and unique ID (which REDCap can also generate) etc.

1.      Changes to data are tracked in a history record

2.      Notes are for data management purposes; they do not export to analysis

                                                v.      Exports include all data; the analysis software has to do the work of selecting which data to analyze

e.       Once the data are in for the two different trials (or events), exported data take the appearance of two rows of data for each subject

                                                  i.      To create an exported file with all subject data on a single row, do NOT create a longitudinal study and duplicate all forms with new variable names identifying the different trials

f.       Calculated fields in REDCap are important for this project in order to immediately create an individual report for each child upon completion of the second trial.

                                                  i.      Example: how to calculate age using the birthdate (in the data file) and “today’s” date.  Calculated field come with a good “help” window to guide syntax.

g.      Kairn’s data reside on REDCap on a FAHC server, because she is collecting PHI.  Access requires an M number and, if offsite, the FAHC remote access portal.  If the project does not have PHI, the data can be stored on a UVM server hosting REDCap. 

h.      Use of REDCap is usually based on an IRB approved project.  However, education and quality improvement projects can use REDCap but need individual approval.

i.        Excellent for planning and organizing the data that support a project.

2.                  Next Workshop Meeting(s): Thursdays, 11:30 a.m. – 12:45 p.m., at Given Courtyard South Level 4.   Remember: the first 15 minutes are for checking in with each other.

a.       February 13: TBD

b.      February 20: Rodger & Connie?

c.       February 27:

d.      March 6:

Recorder: Connie van Eeghen

Autism Spectrum Disorders: Tales from the Mouse

On Friday, January 24, I attended "Autism Spectrum Disorders: Tales from the Mouse," Dr. “Manny” DiCicco-Bloom’s keynote presentation to the Neuroscience, Behavior and Health Research Forum offered by the Vermont Chapter of the Society for Neuroscience. As a clinician I hoped to learn more about Autism Spectrum Disorders (ASD), as a researcher-in-training I wanted to hear about mouse models, and as a translational science student I wanted to get ideas for presenting research on a clinical condition to a mixed audience.

You will find some detailed notes on content below, but here is my take-away list:

1. “Everybody who has autism has a different type of autism” so there’s no hope of finding a single common cause or single effective treatment. Researchers have to make each kind of model and look for the pathways that can be fixed. [This is directly analogous to my work in Auditory Processing Dysfunction.]
2. Mouse models allow researchers to identify specific molecular pathway abnormalities that may underlie specific disease symptoms, determine whether altering pathway activities can overcome specific abnormalities, and develop new therapies for human conditions.
3. There is increasing support for an integrated neurobiological approach to studying complex conditions like autism. NIMH launched Research Domain Criteria project (RDoC) to define basic dimensions of functioning that can be studied across domains (genes, neural circuits, behaviors).
4. TimRoberts at CHOP is doing mouse research on auditory pathways in autism!
5. Interactions among researchers, clinicians, government funding agencies, private funding organizations, families, and patients are important, interesting, and complex.

Here are some content notes:

Nationwide prevalence of Autism Spectrum Disorders (ASD) is approximately 1:88 nationwide, similar to mental retardation and cerebral palsy. After acknowledging the challenge of talking about ASD as the DSM-(diagnostic and statistical manual) 4R gives way to new criteria in the DSM-5, Dr. DiCicco-Bloom shared clinical features of autism (social interactions, communications, restricted repetitive behaviors and interests), different historical labels on the spectrum (Autism, Aspergers, pervasive developmental disorder not otherwise specified), and associated conditions (mental retardation, seizures, problem behaviors, anxiety/mood disorders). Children who later develop autism may have detectable developmental differences in motor skills at 6-12 months and eye gaze as early as two months. It’s not always clear who is best to see and treat these patients.

The challenge for basic scientists presented by Dr. DiCicco-Bloom is that the clinical construct of Autism is based on a menu behavior descriptions that don't directly map to specific underlying causes that likely vary among children. How does one go about making a model of a construct that does not have a single definition? “So researchers talk about the nervous system, or the gut, or whatever” they can model. As such, basic scientists are never working on a “mouse model of Autism,” but rather they’re working on a feature of Autism that they can model.

After a brief reorientation to brain anatomy and physiology, Dr. DiCicco-Bloom talked about some developmental brain abnormalities that are seen in children with in autism although they are not absolute features and cannot be used for diagnosis. He outlined different ways genes can be associated with risk (single genes, common variants, copy-number variants) in a way that was exceptionally clear and helpful for me. He shared examples of environmental factors increasing the brain’s vulnerability to damage including peripheral immune system activation (e.g., Sydenham’s chorea, maternal Lupus, schizophrenia) and environmental toxins (e.g., lead, mercury). He mentioned fMRI research that was done partly for the "translational" component of having a familiar clinical measure to discuss with clinicians. Finally, he shared the example of Fragile X syndrome (FXS, the most common inherited form of autism and caused by the silencing of a single gene) as a success story in which a mouse model enabled the discovery of a pharmacological treatment effective to repair neurological and behavioral symptoms in human adults with dendritic spine defect.

Kessler to speak in Oregon

Rodger Kessler, PhD, Assistant Professor of Family Medicine, will give Grand Rounds at Oregon Health and Science University in Portland on February 12, 2014.  Congratulations!

Clinical Research Oriented Workshop (CROW) Meeting: December 19, 2013

Present:  Marianne Burke, Kat Cheung, Abby Crocker, Kairn Kelley, Amanda Kennedy, Rodger Kessler, Ben Littenberg, Connie van Eeghen

Start Up: The financing intricacies of academics – used to be a maze; now getting easier to trace. 

1.                  Discussion: CROW’s schedule for Spring Semester is set for every Thursday.  We’ll gather at 11:30, topic discussion from 11:45 – 12:45. Starting: Jan 9

2.                  Discussion:  Ben’s planned grant application to identify depression “valences” in the twitter-sphere

a.       Ben summarized the definition of social modeling (the focus of the grant) in terms of mood of twitter correspondents.  Research questions include whether tweets can be given a “depression” valence, whether valence can be affected by response tweets within a social network, and whether valence can be affected by deliberately placed tweets.  Interventions were discussed, along with ethical issues and feasibility, e.g. post-partum mothers who may be experiencing onset of depression.  Further research questions could include tweets from hospital patients, and the ability to assist them on discharge.

3.                  Next Workshop Meeting(s): NEW MEETING TIME on Thursdays, 11:30 a.m. – 12:45 p.m., at Given Courtyard South Level 4.   Remember: the first 15 minutes are for checking in with each other.

a.       January 9: TBA

Recorder: Connie van Eeghen

Job opportunity for Research Specialist - data analysis, programming and modeling

The UVM Transportation Research Center (TRC) has an opening for a Research Specialist with credentials and experience in data analysis, programming and modeling. The Research Specialist position accomplishes this on research project teams that design data collection including travel surveys, tabulate data including through use of programming languages, conduct statistical analysis of data including modeling and run simulations.  The position contributes to the writing of reports, proposals and journal papers including graphical communication of tables, figures, maps and equations.  Generation of new knowledge and dissemination are key outcomes of the TRC’s research work.   TRC’s research spans traditional disciplines and incorporates both qualitative and quantitative analysis.  

More info at http://www.uvm.edu/~transctr/?Page=facstaff%2Fresearch_position_1_7_2013.html