CAROLINA CENTER FOR NEUROSTIMULATION
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Providing personal (raw) data to study participants

1/28/2018

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I would like to take a moment to share with you something we are working on in the Center and to get your input. Now and then, we get research participants who ask about access to their own data. Researchers often provide a pretty picture (brain scan) or a more-or-less random printout of a time-series, which seems to be OK for most participants. Here at the Center, we feel that if you participate in a research study, you should get a copy of your own raw data if you are interested. We are working towards rolling out a policy across all our studies with healthy participants, in close collaboration with our IRB. Here are some of the thoughts and concerns that have come up along the way:
  • How can we make sure participants do not misunderstand the raw data as "clinical results"? The obvious answer is to clearly state that any raw data from a single participant in our studies do not reveal or contain clinical information. Yet, this is a tricky issue since the potential for misunderstandings is quite substantial...
  • How do we actually share the data? If we recorded your EEG and you are interested in getting the complete raw data, we might might need to buy high-capacity memory sticks...
  • Does the IRB allow providing the raw data to the participant? In our case, we have had a good conversation with them about this and have according language in our consent forms.
Overall, we are convinced we are doing the right thing. After all, it is a special privilege to receive permission to perform biological measurements on someone's body. Let's never forget that! What are your thoughts on this? Are there other aspects of how human research studies are performed that could be changed to enhance autonomy and respect of/for the participants? We are eager to hear from you!

Take care,

Flavio
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STILL 3 Study (Auditory Hallucinations in Schizophrenia)

1/23/2018

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I am delighted to share with you that we are now enrolling patients for our new non-invasive brain stimulation study for auditory hallucinations in schizophrenia. This study is a follow up study to STILL 2, where we found that a new type of brain stimulation approach may (with all the uncertainty of small, early pilot studies!) provide more relief than placebo or a more established form of brain stimulation. Please understand that we are pioneering this type of intervention (to our knowledge we are the first in the world to study this specific type of intervention in schizophrenia) and that there are no clear findings (yet!) that prove the effectiveness of any form of brain stimulation for the treatment of schizophrenia. Only through research we will get to that point!

In STILL 3, We are using very low power stimulation with the goal to reduce chronic auditory hallucinations associated with schizophrenia and schizoaffective disorder. In this study, we use a form of stimulation called transcranial alternating current stimulation (tACS). This is a low power intervention that most participants report that they cannot even feel. Previous research, including studies done here at the Carolina Center for Neurostimulation, support further investigations of this modality.
This study will also provide the research community with important and fundamental information on brain rhythms in complex disorders like schizophrenia. This is essential for enhancing our understanding of mental health at a brain-network level and may be key to unlocking future methods of treatment.
 
You may be eligible for the study if:
  • You have been diagnosed with schizophrenia or schizoaffective disorder
  • You are over 18 years old
  • You have at least 3 auditory hallucinations per week
 
If you are interested in the study or have questions please reach out to our Study Coordinators
 
Anthony: 919-966-9929
anthony_criscitiello@med.unc.edu
 
Morgan: 919-966-4755
morgan_alexander@med.unc.edu
 
We have locations at
UNC Chapel Hill Medical School Wings
And
Falstaff Road in Raleigh

We look forward to hearing from you. Please note that this study has been approved by the Institutional Review Board of the University of North Carolina at Chapel Hill. Please do not forget that this is a research study and we do not know yet if any of the interventions studied will ultimately prove effective and become clinical treatments.

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Carolina NEUROSTIMULATION CONFERENCE

1/18/2018

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We are delighted to announce the 2018 Carolina Neurostimulation Conference. The meeting will take place at UNC-Chapel May 21-23 2018 and is organized by our center. We have a list of 19 confirmed speakers from all across the world. We are honored to have the best of the best join us for this meeting. You can learn more about the meeting on the website of the meeting.

I would like to take a moment to explain why we decided to organize this meeting. We have designed it in a way that it should not compete with other existing meetings, but rather provide a different, complementary experience.
  • In today's world, we feel it is particularly important to make sure that excellent scientists of both genders are appropriately represented on the speaker roster.
  • The southeast of the US is a vibrant place for research but not enough scientific meetings take place in this region.
  • As we are growing our Center, we want to make sure we provide value to the brain stimulation community beyond our local stakeholders.
  • Many scientific conferences in our field have become very expensive (high registration fees, international meeting locations, expensive conference hotels etc). We want to create an affordable and accessible meeting.

We hope you are able to join us! Please post below if you have any comments/suggestions for the planned meeting.

We look forward to welcoming you!

Flavio & Team
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If you have questions or concerns about your rights as a research subject, you may contact the UNC Institutional Review Board at 919-966-3113 or by email to IRB_subjects@unc.edu.
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