Heal the world
Study Organizers Group
About
For all (current, previous, and prospective) STUDY ORGANIZERS. We discuss study design, analysis, recruiting, engagement. WE HELP ONE ANOTHER, as we are in this together. This group is also where Genomera posts about new features relevant to Organizers.
Discussion
drdelorenzo joined and answered the questions: What brings you here? What do you hope to discover? “I am a geneticist interested in personal genomics and nutritional genomics. I just joined genomera and love the potential of it. I am looking forward to organizing my first study!”
ccwgoh joined and answered the questions: What brings you here? What do you hope to discover? “social media platform for collection/distribution of brain data”
gbiggers Welcome. Do you have a study or hypothesis in mind that we could test together?
jenwebster joined and answered the questions: What brings you here? What do you hope to discover? “I look forward to being part of a discussion on observational data methods, to contribute my experiences and learn from others.”
MedStartr joined and answered the questions: What brings you here? What do you hope to discover? “How to effectively crowdsource studies for our MedStartrs”
genomics joined and answered the questions: What brings you here? What do you hope to discover? “formulating improved platforms for curating genotypic-phenotypic data”
gbiggers Welcome. Do you have a study in mind that would help or serve as a proof of concept?
Bachers Assessing and including an individual’s “placebo quotient” as a non-linear dynamical aspect of any research project would be quite a feat, and as important a modulator as genomic information in my opinion. Training placebo “upward” to maximize the personal in personalized medicine is something we have seen to be the case in neurofeedback training where enhancements accrue across the entire range of human experience uniquely in each individual. The adequate exploration of these sorts of questions is what excites me about participating in Genomera’s ground-breaking approaches. Alan Bachers
see all 3 comments
Bachers Highly hypnotizable people - fantasy prone, right hemisphere dominant, prone to dissociative states, easily led into altered states, low in inhibition, intellectually and creatively hyperflexible, many synesthetes - are high placebo responders by their very malleability. Not that they "talk themselves into" placebo responses, but that many systems are tractable in many dimensions. They thus have an "exaggerated" response to any intervention compared to normative data. Neurofeedback training seems to move people in this direction by recalibrating the central nervous system out of genetically based, learned, or experienced trauma effects inhibiting flexibility and resilience.
Bachers This observation is why I believe that adding a cell of neurofeedback trained subjects to ANY research will show that subset to have study results often outstripping the active treatment - something few want to confront. At minimum it should make the active treatment have a pretty dramatically better showing in the trained participants. My personal agenda is to include neurofeedback training in personal genomics, telomere, and already measured populations to see just how "deep" this training impacts the human evolutionary trajectory at the individual level.
Bachers Greg – That was a great presentation elucidating the future of democratized research possibilities in which all participants share equal value, responsibility, and results in true collaborative unions. In this vein, I keep wanting to take a fresh look at the universally present placebo, pegged at about 30% in studies where the normal distribution of the Bell shaped curve is imposed on it. To gloss your Gibson quote: “Placebo is already here. It’s just not evenly distributed.” It is the only active ingredient included in every study. In a given individual, it can be curative, or fatal if considered to be a “nocebo.” To appreciate, recruit, and enhance placebo, present varyingly in every participant, empowers potent contributions individuals bring to their own health optimization and disease maintenance. Rather than treating placebo as error variance, it should be celebrated as an active ingredient working “for” or “against” the “data” however it is manifest in each study participant. (see cont.)
What I told the Presidential Commission on Bioethics
U.S. Presidential Commission for the Study of Bioethical Issues ·
posted by gbiggers 
rmurray221 I joined this discussin 7 months ago. I am ineligible to particpate data wise due to definite concers about hesath related to elevated homocystein. Of most concern to me is the effect elevated homocysteine seems to have on neurodegnerative diosders such as alzheimer's and als. My inital homocysteine level was 18.5. I initallly tried mehtyl folate, then adding metl B12. This resulted in levels of around 12. Last I added trimethyl glycine which brought the figure below 10 (my goal). Some confounding factors effecting the study of the snps involved include the status of comt genotype and renal function.
gbiggers The video is here: http://j.mp/PresBioethics
ndiniro joined and answered the questions: What brings you here? What do you hope to discover? “New here, so kicking the tires a bit. Seems to be the obvious place to start :)”
shalini6 joined and answered the questions: What brings you here? What do you hope to discover? “I'm looking to connect with other clinical researchers and learn from them, as well as share my experiences.”
johnkholland joined and answered the questions: What brings you here? What do you hope to discover? “New ways to collect patient-centered endpoints in clinical trials using remote telemonitoring and IVR technologies.”
gbiggers Welcome, John. We would love to hear more about what you have in mind.
gbiggers Today, Genomera invited a batch of new people to join our beta. The account activations are starting to roll in. Now is a good time to post something in your studies to grab the attention of these new users and move them toward participation.
gbiggers We want to create a few 'starter' studies– studies that are short in length (like 7 days or less) with very accessible tasks (protocol). The idea is to organize some studies that are ideal for new Genomera members. A place where people can get their feet wet, and quickly experience the flow and benefits of participation. With the new tasks feature (create a new draft study and you'll see what I mean), these new studies can be perpetual, letting new participants follow the protocol beginning any time they join. Our ideas so far: 1. A simple sleep vs attention study, like Sleepless U. 2. Energy vs time of day taking Vitamin D. 3. An easy genome association study like share your genome and note which type of pain reliever seems to work best for you. Would any of you like to help organize one of these? What other ideas do you have for quick studies to engage newcomers?
yoni Sleep vs attention can be done using Quantified Mind, in that case I'll be glad to help.
jzempel Dear Genomera Organizers: we've been busy creating the next wave of study features and will be rolling them out over the next few days. Stay tuned for details. Now, more than ever, it is important for you to manage the "stage" of your particular study since it impacts the timeframe for data collection. In short, collection of participant data begins when you set your study "in progress". My guess is that this may raise more questions. But rather than attempting to answer those in one big post, please post to this group, and I'll do my best to respond and clarify as needed.
Bachers joined and answered the questions: What brings you here? What do you hope to discover? “Ways to develop questionnaires for those doing neurofeedback as either trainers or trainees.”
ktpickard For questionnaires, check out Traitwise (www.traitwise.com). They offer small surveys free of charge.
gbiggers We automatically added study organizers to this group so that we have a place to collaborate together. You may change your notification settings if you do not wish to fully participate. But we hope you stay, receive help, and offer help to others. Welcome to the new Organizers group. Let's get busy helping one another with our studies!
gbiggers Let us know any way we can help you get a draft started. That's one of the things this group is for.
drdelorenzo Actually, I already started a draft. How could I bring it for discussion to the group?
gbiggers Two options. The first -
gbiggers The first and best is to edit you study and 'list' it. That will make it viewable by everyone. It will start with the stage called 'IN DESIGN,' meaning you are still working on the design of the study. Paste the URL here and invite people to join as discussion participants to collaborate.
gbiggers Second option: When in draft, only people who know the URL (web link) for the study can view it. You could paste the draft URL here, but viewers won't be able to use the collaboration features to discuss it. That's why option 1 is better if you desire collaboration.