{
  "id": 3843,
  "title": "Availability of data for research",
  "url": "/competitions/predicting-parkinson-s-disease-progression-with-smartphone-data/discussion/3843",
  "author_name": "",
  "post_date": "2013-02-14T21:24:39.047Z",
  "votes": null,
  "comment_count": 13,
  "views": 5708,
  "content": "<p>Hi all,</p>\r\n<p>I would like to know if it would be possible to publish my findings (if any) elsewhere in scientific journals / conferences after submitting it to the contest.</p>\r\n<p>Thank you</p>",
  "messages": [
    {
      "id": "20473",
      "postDate": "02/14/2013 21:24:39",
      "content": "<p>Hi all,</p>\r\n<p>I would like to know if it would be possible to publish my findings (if any) elsewhere in scientific journals / conferences after submitting it to the contest.</p>\r\n<p>Thank you</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "20648",
      "postDate": "02/20/2013 23:53:28",
      "content": "<p>I have the same question. To what extent we can publish the findings? For example, a novel algorithm for analyzing all the data does not necessarily reveal anything about the data. It would be a great opportunity and may help in increased participation by\r\n researchers if we can publish the findings.</p>\r\n<p>Thanks!</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "20676",
      "postDate": "02/21/2013 16:57:54",
      "content": "<p>Hi all,&nbsp;</p>\r\n<p>we would be delighted and actually encourage to publish your findings! It would be appropriate to reference the study as follows: &quot;With data from the MJFF (Michael J Fox Foundation) Parkinson Data Challenge&quot;.&nbsp;</p>\r\n<p>Thanks, and good luck!</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "20892",
      "postDate": "02/26/2013 22:33:43",
      "content": "<p>Apologies if this is a FAQ. &nbsp;I am a newbie participant. Although I've had an acoount for a while, this data set got me to dive right in.</p>\r\n<p>Can this data be used outside this competition particularly in a open learning context? &nbsp;With all proper citations of course. And full recognition of any other proprietary interests of TMJFF.</p>\r\n<p>Specifically I am creating some open data science self-learning materials that will be freely licensed. A data set like this is a great exemplar of a real world data set. &nbsp;The benefit of making it available after the competition is that many more eyes will\r\n be looking at it and who knows what might come up? &nbsp;Plus students get an idea of what real world data looks like and the kind of cleanup that is necessary before anything useful can be done with it.</p>\r\n<p>Thanks.</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "20915",
      "postDate": "02/27/2013 03:50:53",
      "content": "<p>This is delightful! What a great way to contribute to science! Thanks a lot for providing such an opportunity and dataset!</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "20920",
      "postDate": "02/27/2013 16:35:27",
      "content": "<p>[quote=NBorwankar;20892]</p>\r\n<p>Apologies if this is a FAQ. &nbsp;I am a newbie participant. Although I've had an acoount for a while, this data set got me to dive right in.</p>\r\n<p>Can this data be used outside this competition particularly in a open learning context? &nbsp;With all proper citations of course. And full recognition of any other proprietary interests of TMJFF.</p>\r\n<p>Specifically I am creating some open data science self-learning materials that will be freely licensed. A data set like this is a great exemplar of a real world data set. &nbsp;The benefit of making it available after the competition is that many more eyes will\r\n be looking at it and who knows what might come up? &nbsp;Plus students get an idea of what real world data looks like and the kind of cleanup that is necessary before anything useful can be done with it.</p>\r\n<p>Thanks.</p>\r\n<p>[/quote]</p>\r\n<p>Hi there,&nbsp;</p>\r\n<p><span>thanks for your query. Despite we encourage publication of results, data sharing is a different issue. Unfortunately, for this open source environment, we don't think that it would</span><span>&nbsp;be appropriate because everybody who uses the data needs\r\n a data use agreement in place for the non-identification of subjects. So short answer is no, data cannot be published outside this competition.&nbsp;</span></p>\r\n<p><span>I hope this helps to clarify.</span></p>\r\n<p><span>Best, </span></p>\r\n<p><span>Maurizio&nbsp;</span></p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "21708",
      "postDate": "03/27/2013 15:15:15",
      "content": "<p>Hello,</p>\r\n<p>Due to the lack of time my team was thinking of exploring a bit further the data and try to submit a paper. Given that further findings will not be submited to this challenge is there any problem of using the data to other ends, in this case a scientific\r\n journal perhaps?</p>\r\n<p>&nbsp;</p>\r\n<p>Thanks in advance,</p>\r\n<p>Ricardo</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "21712",
      "postDate": "03/27/2013 16:59:18",
      "content": "<p>I am in the same situation.&nbsp;</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "21723",
      "postDate": "03/27/2013 21:40:39",
      "content": "<p>Hi there,</p>\r\n<p>We are also exploring publishing using this data. Most of the journals we look to publish in in the health area require a statement about the ethical clearance for a study - e.g. &quot;A statement that ethics approval was obtained for the study (or that it was\r\n not required), including the name of the ethics committee or institutional review board&quot;&nbsp; Is there a statement that could be made for this data collection/release re ethics, informed consent etc?</p>\r\n<p>&nbsp;</p>\r\n<p>Thanks!</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "22149",
      "postDate": "04/04/2013 09:53:58",
      "content": "<p>Hi again,</p>\r\n<p>&nbsp;</p>\r\n<p>I'm sorry if I'm being annoying but I need an answer to my previous question since one of the conferences we want to submit as a pretty strict deadline and we would like to start inly after having a positive feedback instead of haing to drop the research\r\n midway...</p>\r\n<p>&nbsp;</p>\r\n<p>Regards,</p>\r\n<p>Ricardo Graça</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "22191",
      "postDate": "04/04/2013 22:32:55",
      "content": "<p>Hi everybody,&nbsp;</p>\r\n<p>sorry for the delay in replying to this. We were finalizing some legal issues and other technicalities...</p>\r\n<p>We would love to see our data published, in fact we encourage that! We just require that each publication report the following sentence in their methods section:&nbsp;</p>\r\n<p>&quot;Data used in the preparation of this article were obtained from the PD Data Challenge database provided by the Michael J Fox Foundation. For up-to-date information on the data, visit\r\n<a href=\"http://www.michaeljfox.org/datachallenge\">www.michaeljfox.org/datachallenge</a>.”</p>\r\n<p>Also, to Jacki's question, informed consent was obtained from all participants (the 9 PD subjects and the 7 controls) and approval was obtained from the MIT IRB. Hope this helps.&nbsp;</p>\r\n<p>Best,&nbsp;</p>\r\n<p>Maurizio</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "22193",
      "postDate": "04/04/2013 23:09:45",
      "content": "<p>Hi Maurizio,</p>\r\n<p>Even if the discoveries were not submited in the challenge we can use them in a publication?</p>\r\n<p>&nbsp;</p>\r\n<p>Regards,</p>\r\n<p>Ricardo</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "22221",
      "postDate": "04/05/2013 07:35:05",
      "content": "<p>Thank you Maurizio - that is very helpful!</p>\r\n<p>&nbsp;</p>\r\n<p>Cheers</p>\r\n<p>Jacki</p>",
      "rawMarkdown": "",
      "votes": null
    },
    {
      "id": "22304",
      "postDate": "04/05/2013 23:03:20",
      "content": "<p>@ Ricardo: yes! No problem, as long as they report the disclosure in the method session.&nbsp;</p>\r\n<p>Best,&nbsp;</p>\r\n<p>M</p>",
      "rawMarkdown": "",
      "votes": null
    }
  ],
  "comments": [
    {
      "id": 20648,
      "author_name": "knoesis",
      "author_url": "",
      "post_date": "02/20/2013 23:53:28",
      "content": "<p>I have the same question. To what extent we can publish the findings? For example, a novel algorithm for analyzing all the data does not necessarily reveal anything about the data. It would be a great opportunity and may help in increased participation by\r\n researchers if we can publish the findings.</p>\r\n<p>Thanks!</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 20676,
      "author_name": "mauriziofacheris",
      "author_url": "",
      "post_date": "02/21/2013 16:57:54",
      "content": "<p>Hi all,&nbsp;</p>\r\n<p>we would be delighted and actually encourage to publish your findings! It would be appropriate to reference the study as follows: &quot;With data from the MJFF (Michael J Fox Foundation) Parkinson Data Challenge&quot;.&nbsp;</p>\r\n<p>Thanks, and good luck!</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 20892,
      "author_name": "nborwankar",
      "author_url": "",
      "post_date": "02/26/2013 22:33:43",
      "content": "<p>Apologies if this is a FAQ. &nbsp;I am a newbie participant. Although I've had an acoount for a while, this data set got me to dive right in.</p>\r\n<p>Can this data be used outside this competition particularly in a open learning context? &nbsp;With all proper citations of course. And full recognition of any other proprietary interests of TMJFF.</p>\r\n<p>Specifically I am creating some open data science self-learning materials that will be freely licensed. A data set like this is a great exemplar of a real world data set. &nbsp;The benefit of making it available after the competition is that many more eyes will\r\n be looking at it and who knows what might come up? &nbsp;Plus students get an idea of what real world data looks like and the kind of cleanup that is necessary before anything useful can be done with it.</p>\r\n<p>Thanks.</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 20915,
      "author_name": "knoesis",
      "author_url": "",
      "post_date": "02/27/2013 03:50:53",
      "content": "<p>This is delightful! What a great way to contribute to science! Thanks a lot for providing such an opportunity and dataset!</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 20920,
      "author_name": "mauriziofacheris",
      "author_url": "",
      "post_date": "02/27/2013 16:35:27",
      "content": "<p>[quote=NBorwankar;20892]</p>\r\n<p>Apologies if this is a FAQ. &nbsp;I am a newbie participant. Although I've had an acoount for a while, this data set got me to dive right in.</p>\r\n<p>Can this data be used outside this competition particularly in a open learning context? &nbsp;With all proper citations of course. And full recognition of any other proprietary interests of TMJFF.</p>\r\n<p>Specifically I am creating some open data science self-learning materials that will be freely licensed. A data set like this is a great exemplar of a real world data set. &nbsp;The benefit of making it available after the competition is that many more eyes will\r\n be looking at it and who knows what might come up? &nbsp;Plus students get an idea of what real world data looks like and the kind of cleanup that is necessary before anything useful can be done with it.</p>\r\n<p>Thanks.</p>\r\n<p>[/quote]</p>\r\n<p>Hi there,&nbsp;</p>\r\n<p><span>thanks for your query. Despite we encourage publication of results, data sharing is a different issue. Unfortunately, for this open source environment, we don't think that it would</span><span>&nbsp;be appropriate because everybody who uses the data needs\r\n a data use agreement in place for the non-identification of subjects. So short answer is no, data cannot be published outside this competition.&nbsp;</span></p>\r\n<p><span>I hope this helps to clarify.</span></p>\r\n<p><span>Best, </span></p>\r\n<p><span>Maurizio&nbsp;</span></p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 21708,
      "author_name": "ricardograca",
      "author_url": "",
      "post_date": "03/27/2013 15:15:15",
      "content": "<p>Hello,</p>\r\n<p>Due to the lack of time my team was thinking of exploring a bit further the data and try to submit a paper. Given that further findings will not be submited to this challenge is there any problem of using the data to other ends, in this case a scientific\r\n journal perhaps?</p>\r\n<p>&nbsp;</p>\r\n<p>Thanks in advance,</p>\r\n<p>Ricardo</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 21712,
      "author_name": "ptcesq",
      "author_url": "",
      "post_date": "03/27/2013 16:59:18",
      "content": "<p>I am in the same situation.&nbsp;</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 21723,
      "author_name": "jacki86607",
      "author_url": "",
      "post_date": "03/27/2013 21:40:39",
      "content": "<p>Hi there,</p>\r\n<p>We are also exploring publishing using this data. Most of the journals we look to publish in in the health area require a statement about the ethical clearance for a study - e.g. &quot;A statement that ethics approval was obtained for the study (or that it was\r\n not required), including the name of the ethics committee or institutional review board&quot;&nbsp; Is there a statement that could be made for this data collection/release re ethics, informed consent etc?</p>\r\n<p>&nbsp;</p>\r\n<p>Thanks!</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 22149,
      "author_name": "ricardograca",
      "author_url": "",
      "post_date": "04/04/2013 09:53:58",
      "content": "<p>Hi again,</p>\r\n<p>&nbsp;</p>\r\n<p>I'm sorry if I'm being annoying but I need an answer to my previous question since one of the conferences we want to submit as a pretty strict deadline and we would like to start inly after having a positive feedback instead of haing to drop the research\r\n midway...</p>\r\n<p>&nbsp;</p>\r\n<p>Regards,</p>\r\n<p>Ricardo Graça</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 22191,
      "author_name": "mauriziofacheris",
      "author_url": "",
      "post_date": "04/04/2013 22:32:55",
      "content": "<p>Hi everybody,&nbsp;</p>\r\n<p>sorry for the delay in replying to this. We were finalizing some legal issues and other technicalities...</p>\r\n<p>We would love to see our data published, in fact we encourage that! We just require that each publication report the following sentence in their methods section:&nbsp;</p>\r\n<p>&quot;Data used in the preparation of this article were obtained from the PD Data Challenge database provided by the Michael J Fox Foundation. For up-to-date information on the data, visit\r\n<a href=\"http://www.michaeljfox.org/datachallenge\">www.michaeljfox.org/datachallenge</a>.”</p>\r\n<p>Also, to Jacki's question, informed consent was obtained from all participants (the 9 PD subjects and the 7 controls) and approval was obtained from the MIT IRB. Hope this helps.&nbsp;</p>\r\n<p>Best,&nbsp;</p>\r\n<p>Maurizio</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 22193,
      "author_name": "ricardograca",
      "author_url": "",
      "post_date": "04/04/2013 23:09:45",
      "content": "<p>Hi Maurizio,</p>\r\n<p>Even if the discoveries were not submited in the challenge we can use them in a publication?</p>\r\n<p>&nbsp;</p>\r\n<p>Regards,</p>\r\n<p>Ricardo</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 22221,
      "author_name": "jacki86607",
      "author_url": "",
      "post_date": "04/05/2013 07:35:05",
      "content": "<p>Thank you Maurizio - that is very helpful!</p>\r\n<p>&nbsp;</p>\r\n<p>Cheers</p>\r\n<p>Jacki</p>",
      "votes": null,
      "replies": []
    },
    {
      "id": 22304,
      "author_name": "mauriziofacheris",
      "author_url": "",
      "post_date": "04/05/2013 23:03:20",
      "content": "<p>@ Ricardo: yes! No problem, as long as they report the disclosure in the method session.&nbsp;</p>\r\n<p>Best,&nbsp;</p>\r\n<p>M</p>",
      "votes": null,
      "replies": []
    }
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