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You are invited to participate in a research study titled “Genetic Patterns Among PANS/PANDAS patients”. This study is being conducted by Bob Horvath, Mark Moeglein, Michaela Holden and Sam Keating. We are "citizen scientists” with some qualifications in statistics and data manipulation, and direct experience (ourselves or family members) with various autoimmune or immunological conditions and/or autism, all of which we suspect are related. The purpose of this study is to find out whether certain variations in DNA occur more commonly among PANS patients than the general population. If we find some, we will let you and many others see the (aggregate) results, and hope that a finding will spur further research into the biological processes, and ultimately, in the long term, possibilities for remedies for the disorder. Participation in this is entirely voluntary. You can choose not to participate at all, or to participate anonymously, or with your name attached to the data. Either way, there will be no effect on your relationship with the researchers, or any other negative consequences with not participating. You are being asked to take part in this study because you are a parent of a PANS/PANDAS child, or you are an adult that has suffered with PANS/PANDAS symptoms as a child, or as an adult. If you agree to participate, you will be asked to click on a link below and upload 23andMe or similar genetic data for one person (at this time, please don't upload multiple family members, just the one). You may also email your data (see below). The data will be collected regularly from the upload site, with a January 19th, 9pm EST cutoff time for data used in the study. Data uploaded after the cutoff time will be safely stored (with no direct identification of participants) on two computers only, for possible later confirmation of any result with the initial data. Even if you give your name, the data will not contain that name, but be coded before being processed. After the initial upload and the coding step, no other person, website or online service will have access to your data with your identification attached to it. Your data will be uploaded to GEDmatch (without your identification) in order to obtain ancestry, and to confirm no close relationships (>3%) to other participants. No genetic disease information will be extracted from participant data. For those that contribute anonymously, the only link between us and you will be a fake name and email address that you give at the upload site. You are free to withdraw from this study at any time. However, once you submit your data, the only way to withdraw your anonymous data is if you contact myself (Bob Horvath) and reveal your fake name, so that I know which data to remove. This step could reveal your identity, but your data will be removed from the study. Study data will be stored without names in digital format. One copy will be on a computer in Ontario Canada, and another will be kept on a computer in Oregon, U.S.A. Only Bob Horvath and Mark Moeglein will have access to this full data. Aggregate results for the analysis of the data will later be made known publicly. There are no known risks associated with this study, beyond any risk there may be associated with the data existing (e.g. on the originating site, such as 23andMe). While you will not experience any immediate direct benefits from participation, information collected in this study may benefit you and others in the future by helping to determine genetic factors associated with PANS/PANDAS. If you have any questions regarding the survey or this research project in general, please contact the principal investigator, Bob Horvath, at email@example.com By clicking on the link below to the upload site, or sending data to the email address above, you are indicating your consent to participate in this study. If you want to contribute anonymously, submit only a fake name and email address at the link. If you use a fake name, make it unique (unidentifiable by others) and make a record of it, in case there is any need to try to contact you (via a comment to this poll in the online groups it is listed in). https://www.dropbox.com/request/zrejlPbUjAnvN0OuK4Ny
Has anybody had a chance to read this new paper? (Kim?) I skimmed it on my phone and haven't had a chance to read it closely. I think there are some fishy things about it, for one thing not very many African Americans were in the study. http://jama.jamanetwork.com/article.aspx?articleid=2275444 Of course, all the media is lit up with how once again, here is another study that shows no link between MMR and autism..I need to take the time to read the paper more closely....did they look at any other vaccines in the study, or the age at which MMR was actually given to the siblings (1 year vs 4 year?) ? Maybe they were spaced out more, delayed, or other vaccines such as hep B or Chicken Pox were omitted?). Did they allot enough time for the siblings to actually receive an autism diagnosis, or did they "wrap up" the study before enough years had elapsed to see if the siblings were eventually diagnosed? http://www.theguardian.com/society/2015/apr/21/no-link-between-mmr-and-autism-major-study-concludes?CMP=share_btn_fb ^^here are some snippets from some of the comments by readers 1) conflicts of interest 2) "As King suggests, there's no signal to suggest a relationship. The sampling on this is way off to make an adequate interpretation with confidence. The group size for unvaccinated kids with ASD siblings is 269. So given the "noisy" results, you'd be similarly valid in arguing the MMR reduces ASD risk." 3) good comments by John_MD (sorry for the weird copy/paste) John_MD 8h ago 34 Can somebody help me out here? I just looked through the paper and the numbers as reported show that kids with autistic siblings who are NOT vaccinated are 39% more likely to get autism that those who are not! So in their attempt to show that vaccines don't cause autism in high risk children, they've it can actually reduce the risk of developing it! I really want this paper to be legitimate, but if the data collection was done at random, such a result would be quite unlikely (and maybe, the vaccines can cure autism, but that is even less believable than the original hypothesis). The numbers are found here: http://amaprod.silverchaircdn.com/data/Journals/JAMA/933762/joi150033t2.png?v=635651498182930000 Reply |Pick Report 100383 John_MD 8h ago 34 I noticed the same thing in the original JAMA article. The relative risk is HIGHEST among the 5-year group kids whose siblings do not have ASD. Reply |Pick Report 6jjjjj John_MD 8h ago 12 Yes, I did not get that either. I raised that question earlier here, and all the people here raised up a ruckus of indignation, but when it came down to it, could not explain it either. I wasn't sure if I go the stats wrong, and got 'no vaccine/ to vaccine' backwards. I was also reading this from the article: "The pattern in RRs across these groups was such that lower RR estimates (commonly extending into the protective range, ie, below 1.0) were observed at younger vs older ages and in children with older siblings with vs without ASD. Although protective estimates tended not to reach statistical significance, this pattern is worth further consideration. It is possible, for example, that this pattern is driven by selective parental decision making around MMR immunization, ie, parents who notice social or communication delays in their children decide to forestall vaccination. Because as a group children with recognized delays are likely to be at higher risk of ASD, such selectivity could result in a tendency for some higher-risk children to be unexposed." The way they are talking about it there, is that parents who DON"T vaccinate the second child, get the protective benefit. Is that right? In that case, according to this study, it means that children who do NOT get vaccinated, and are siblings of ASDs, get a 44% reduction in ASD risk if they don't get vaccinated. I am kind of confused on how they are presenting the data. Reply |Pick Report John_MD 6jjjjj 8h ago 12 I think what they are saying is that vaccines do not reduce the risk of autism, but parents who know their kid is likely going to be autistic (especially knowing that their sibling is), are more likely to shy away from vaccinating their child. BUT here lies the problem: this self-selection makes the study less valid since now we don’t know what would have happened had the high risk children who were not vaccinated and are not autistic been vaccinated (we don’t know how many of them there are, but we know that the samples are not random). Reply |Pick Report Loading… 6jjjjj John_MD 8h ago 12 Yes I think what you are saying makes sense. But I think this study was kind of confusing, as to how it presented its data. It could have made it a little more clear. Reply |Pick Report 100383 John_MD 8h ago 23 Exactly. The cell size is TINY for the unvaccinated child with an ASD sibling.