Parkinson’s Disease Research Collaboration Program

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Call for proposals

23andMe and The Michael J. Fox Foundation for Parkinson’s Research (MJFF) are committed to improving understanding of Parkinson’s disease (PD) with the goal of accelerating discovery and development of new diagnostics, treatments and ultimately a cure. In recognition of our shared goal, 23andMe and MJFF seek proposals for collaborative PD research using the 23andMe research database and its genotyped PD cohort. Researchers may propose analyses to conduct with 23andMe scientists. Leverage and sharing of complementary data resources and application of new methodologies and approaches are highly encouraged.

 

Will funding be available?

Selected investigators will be able to work with 23andMe to study information from its PD cohort to answer critical PD questions. Given the nature of this program, no specific funding is being offered to collaborators and applications should not include a budget request. In certain cases, 23andMe may provide a small amount of funding (<$25k) to offset costs for truly innovative proposals.

 

What data can be found in the 23andMe database?

The 23andMe PD Research Community was launched in 2009 with the aim of recruiting a large, genotyped cohort engaged in online research. Inclusion criteria include being age 18 or older and self-declaring a diagnosis of PD by a physician. 23andMe has confirmed that demographics, e.g. sex ratio, as well as GWAS and other findings are broadly similar to those in the literature from more traditional cohorts (Do et al. 2011). In addition, video-based evaluation by a movement disorder specialist confirmed diagnosis and self-reported symptoms in 50 participants (Dorsey et al. 2015).

Eligible participants are genotyped at between ~570,000 and ~960,000 SNPs (currently imputed to approximately 25 million SNPs) covering both common variants and specific alleles of interest (LRRK2 G2019S, etc.), and asked to complete a comprehensive PD background survey. This survey covers early symptoms and diagnosis, current symptom severity and impact on function (from MDS-UPDRS parts I and II), family history, medications, and exposure to known environmental risk factors. This is followed by a number of PD-related surveys including on history of head injury and pesticide exposure, and smoking and caffeine consumption. Since community members are also consented for the general 23andMe research protocol, they have the opportunity to answer additional surveys (>55) and questions (>400) covering a broad range of topics. In addition, data from the general 23andMe research population can be used, as appropriate, to create relevant control cohorts.

Given strong interest in the role of LRRK2 gene mutations in PD, we have >2,000 carriers of the G2019S mutation in the 23andMe database. A subset (~200) of these participants have stored whole blood samples. We also have whole genome sequences from an additional subset (~150) of G2019S carriers, both with and without PD.

As of June 2016 approximately 13,000 individuals had joined the 23andMe PD community and of these 10,350 had been genotyped, answered at least the PD background survey and were consented for research. Participants have agreed to being re-contacted for additional surveys and research projects.

A more detailed description of available resources and answers to specific questions can be obtained by sending email to pd_collaborations@23andMe.com, please include “QUESTION” in your subject line.

 

What type of collaboration is of interest?

We seek collaborators who will enable new PD discoveries from the 23andMe database by proposing innovative analyses or data collection ideas, sharing complementary datasets from which to draw or replicate results, and/or applying novel analytic techniques. We are open to a range of collaborations, including but not limited to:

  • Genome-wide association study (GWAS) meta-analyses with independent cohorts
  • Identification of rare variants with whole-genome sequencing data
  • Fine-mapping of causal variants with targeted sequencing data
  • Application of genotypic or phenotypic data for disease risk prediction
  • Validation of survey responses through clinical assessment

Collection of new phenotype information to generate or validate innovative hypotheses related to prodromal disease, disease mechanism, risk and progression prediction, subtyping, etc.

 

Who can apply?

Institutions can be domestic or foreign, public or private. They can be commercial but the research must be for non-commercial purposes, and the results must be shared with the research community through public presentations and peer-reviewed publication.

Researchers may be at any stage of their careers. Applications submitted by a group of researchers at the same institution will also be considered.

 

How do I apply?

Applications should be submitted via this linked form by April 19, 2017. The application requests the following information:

  • A research proposal summary (no more than 500 words), which will be made public if the proposal is accepted.
  • A description of the proposed research project (no more than 2,000 words).
  • A description of unique datasets or analytic tools that your research group has developed and will provide for the collaboration. Researchers should include a description of the IRB-approved protocol used to collect the dataset, if applicable (a total of no more than 1,000 words).
  • NIH-style biosketches, or CVs, for the principal investigator.
  • A list of co-investigators and other personnel and their roles.

 

How will applications be evaluated?

Applications will be evaluated by scientists from 23andMe and MJFF, with input from a Scientific Advisory Board, based on the following considerations:

  1. Scientific quality and innovativeness of the project proposed
  2. Expertise of and resources available to the investigators
  3. Alignment with 23andMe and MJFF objectives
  4. Quality and value of potential complementary datasets that can be shared with 23andMe for combined analyses

Priority will be given to proposals deemed most likely to generate novel insights.

It is anticipated that proposal evaluation and selection will be completed by July and that the first projects should start by September.

 

Additional Information and Requirements

  • Due to the specifics of participant consent, 23andMe data will be shared in aggregate (rather than individual level) and cannot be distributed, shared, or sold to third parties.
  • Chosen collaborators will receive non-exclusive access to the 23andMe results.
  • Collaborators must agree that the results of their research will be published in open-access scientific journals (or open-access articles) and according to 23andMe’s publication best practices. Currently, in order to protect participant privacy, those best practices only allow for the publication of summary statistics for up to 10,000 SNPs; this applies to meta-analyses that include 23andMe data.
  • Collaborators will meet with 23andMe and MJFF (in person or by phone) to discuss the research.
  • To enable 23andMe’s collaboration and data transfer each collaborator must enter into an Academic Research Agreement with 23andMe, including the above terms and other requirements.

 

About protecting customer privacy

Protecting the privacy of our research participants is of critical importance to 23andMe. Data sharing is structured to provide the same robust privacy protections that 23andMe research participants have as part of their normal participation in 23andMe Research. Only data from 23andMe customers who have accepted 23andMe’s IRB-approved consent document will be incorporated into any analysis. Only de-identified, aggregate data will be shared – no individual level data will be shared. All applicants should take this policy into consideration when designing the research approach.

Any data sharing will take place in accordance with the terms of the 23andMe Academic Research Agreement between a collaborator and 23andMe. Any actions taken by our collaborators that threaten the privacy of 23andMe research participants are grounds for termination of the collaboration and to other remedies described in such agreement.

If you have questions, please contact the Parkinson’s Disease Academic Research Collaborations Program Manager Nadia Litterman (nlitterman@23andme.com).

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