If you are interested in working with the data describing research participants from Samoa who were recruited as part of the 2010 Soifua Manuia Genome-Wide Association Study (dbGaP phs000914, total n = 3501 and n = 3119 with genotypes) or who were sequenced as part of the TOPMed Whole-Genome Sequencing Program (dbGaP phs000972, n = 1285, a subset of the genotyped participants in phs000914), there are three avenues to do so.

  • Direct Collaboration

    If you are interested in collaborating with us on a research question in such a way that individual-level research data does not to be present on your local machines and any analyses can be conducted by our team performing analysis with the data on our local servers, please reach out to us. For example, we have reported variant allele frequencies, and we have served as validation-stage cohort for genome-wide association studies of Pacific and Māori peoples.

    Such a collaboration would typically include authorship for the OLaGA Study Group analysts as well as for Samoan collaborators.

    Research products such as manuscripts are reviewed by the Health Research Committee (HRC) of the Ministry of Health of the Independent State of Samoa prior to publication to assure compliance with approved Soifua Manuia protocols and to assist in crafting narratives describing the Samoan people.

    Research products such as manuscripts should also include an abstract in Samoan as well as the standard abstract in English. Our research team can facilitate the translation of the abstract into Samoan.

  • TOPMed Mechanism

    If you are a TOPMed investigator and you are interested in working with the data describing the research participants from Samoan who were sequenced as part of the TOPMed Whole-Genome Sequencing Program (phs000972, n = 1285) as well as the demographics and phenotypes for them from the 2010 Soifua Manuia Genome-Wide Association Study (phs000914), you can use the TOPMed Paper Proposal mechanism to access the data through the TOPMed Exchange Area. All investigators are expected to comply with both the TOPMed data sharing and data use policies (https://topmed.nhlbi.nih.gov/topmed-data-sharing-policies) and the data sharing and data use policies specific to the Samoan Study.

    Data requests of the Samoan Study data require a letter of collaboration from the OLaGA Study Group. To obtain a letter of collaboration, contact Dr. Ryan Minster (rminster@pitt.edu). In your request for a letter of collaboration include your study proposal. One the request has been received, it will be shared with the OLaGA Steering Committee, who will make a determination about whether to issue a letter of collaboration or not.

     Typical conditions of collaboration are:

    a.      If a novel variant with an effect on one of the phenotypes is identified in Samoan study-specific exploratory and/or QC-type analysis, the OLaGA Study Group would want to be informed so that we discuss being able to work more intensively on it or move forward on our own with that finding. In the latter case, your larger cross-study group effort which found the interesting study-specific results would be recognized as authors. In either case, when the narrative of the paper includes discussion of the findings in relationship to the Samoan people, we ask that the HRC be able to review the manuscript prior to publication to assure compliance with approved Soifua Manuia protocols and to assist in crafting narratives describing the Samoan people.

    b.     All manuscripts that use and include Samoan data must have both Leausa Dr Take Naseri and Asiata Dr Satupa‘itea Viali as named authors. Their inclusion is a condition of our collaboration with the people of Samoa. We request that any other members of the OLaGA Study Group who contributed to the analysis and writing be considered as a named author.

    c.      Finally, we ask that the Study Group be named in any acknowledgements or supplementary materials: “The Samoan Obesity, Lifestyle and Genetic Adaptations (OLaGA) Study Group.”

  • dbGaP Mechanism

    If you are not a TOPMed investigator and you are interested in working with either the data describing the research participants from Samoan who were sequenced as part of the TOPMed Whole-Genome Sequencing Program (phs000972, n = 1285), the 2010 Soifua Manuia Genome-Wide Association Study (phs000914, total n = 3501 and n = 3119 with genotypes), or both, you can request these data through the dbGaP Data Access Request mechanism.

    The following data use limitations are in place for both studies:

    a.      The data are available for general research use.

    b.     Requestors must provide documentation of local IRB approval, that is, the IRB approval of the Requestors’ instutition(s).

     c.      Requestors agrees to make results of studies using the data available to the larger scientific community through publication.

    d.     Requestors must provide a letter of collaboration with the primary study investigator. Additional details about the letter of collaboration are below

    e.      Use of the data is limited to not-for-profit organizations.

    f.        Use of the data is limited to genetic studies only.

    Additionally, genomic summary results (GSR) from these two studies are by default limited to controlled access because the population is from an isolated geographic region and are therefore designated “sensitive.” GSR may be shared through unrestricted access with approval by the HRC.

    To obtain a letter of collaboration for data requested through the dbGaP mechanism, contact Dr. Ryan Minster (rminster at pitt dot edu). In your request for a letter of collaboration include your study proposal. One the request has been received, it will be shared with the OLaGA Steering Committee, who will make a determination about whether to issue a letter of collaboration or not.

     Conditions of collaboration are:

    a.      The study proposal must be submitted for approval to the Health Research Committee (HRC) of the Ministry of Health of the Independent State of Samoa. The HRC meets every other month (Feb, Apr, Jun, Aug, Oct, and Dec) on the third Thursday. [Materials should be to the HRC for Committee member review ten days before the meeting, keeping in mind that Samoa’s time zone is UTC+13 and therefore the materials may be due and the meeting will be held a day sooner than a requestor’s local time. HRC Proposal templates can be obtained through Dr. Ryan Minster.] If the study is approved by the HRC, investigators must comply with the conditions of the HRC approval, including manuscript review by the HRC prior to publication to assure compliance with approved protocols and to assist in crafting any narratives describing the Samoan people.

    b.     All manuscripts that use and include Samoan data must have both Leausa Dr Take Naseri and Asiata Dr Satupa‘itea Viali as named authors. Their inclusion is a condition of our collaboration with the people of Samoa. We request that any other members of the OLaGA Study Group who contributed to the analysis and writing be considered as a named author.

    c.      Finally, we ask that Study Group be named in any acknowledgements or supplementary materials: “The Samoan Obesity, Lifestyle and Genetic Adaptations (OLaGA) Study Group.”