PROMnet Announcements: New website, position paper, newsletter in the works, and some cool new PROMs!

[Williams, Zachary J]

Dear Autism PROMnet Members,

Happy New Year! I hope you’re all having a lovely start to your 2023. I wanted to write to update the group about some exciting developments that I and the rest of the PROMnet leadership team and have been working on over the past few months. There’s a lot planned for Autism PROMnet in the coming year, and we’re looking forward to (a) being a lot more engaged with our members and (b) launching many of the initiatives we had first sketched out at the PROM SIG at INSAR 2022. 

Quick Membership Update:

A ton of folks have joined the PROMnet community since this organization formed last May, and membership in the google group is almost to 100! We’re always looking to grow the community of people interested in improving outcome measurement in autism research, so if you happen to know anyone who would like to join Autism PROMnet, feel free to share this google form, and we can add them to the listserv. A more comprehensive recruitment push is planned in the coming months.

Autism PROMnet now has a website: (https://www.autismpromnet.org/)

The PROMnet team is proud to announce that we’re not just a google group anymore, because no organization is complete without its own website. Although still under construction, this is the place that we will host the materials for our various initiatives (e.g., our PROM and training repositories), and we hope it can serve as a source of valuable (and freely-available) information for autism researchers/clinicians and others in the community. 

The Year 2 “PROMs in Autism” SIG Proposal is Submitted to INSAR 2023:

We’ve also now submitted an application to continue our PROM Special Interest Group at INSAR 2023 (May 3–6) in Stockholm (which, given INSAR’s track record of approving continuations of previous SIGs, should be approved). After feedback from the attendees at last year’s SIG, we wanted to make even more time for small/large group discussions, which everyone felt were the most valuable part. See below for a draft agenda. 

Introduction and SIG initiatives updates (20 minutes)

• Review state of PROM science in autism research, research gaps, barriers, and recommendations and future priorities (as summarized in collaborative position paper written by SIG team) 
• Highlight Autism PROMnet Google Group – networking platform
• Highlight Autism PROMnet Training Resources – crowdsourced list of resources on measurement
• Highlight Autism PROMnet Measure Repository – crowdsourced repository of PROMs with psychometric evidence in autism     

Small group discussions (50 minutes)

• Small group discussions are expanded based on survey feedback (e.g., requesting longer small group discussions, highly beneficial aspect of SIG)
• Attendees will engage in brainstorm discussions and rotate across different small group stations each focused on a different PROM topic such as “incorporating autistic lived experience into measure development,” “developing standard guidelines for adapting general-population PROMs for autistic people,” and “validating PROMs for clinical use.”

Large group discussion (20 minutes)

SIG Year 1 Position Paper in Progress:

We on the PROMnet leadership team have also started drafting a commentary piece based on the discussions at the Year 1 SIG to eventually submit to Autism Research. A working draft of this piece is nearly complete and will be circulated throughout the core author team before being opened up to a broader group of authors (including the members of this group who are willing to contribute sufficiently and meet the criteria for authorship). There will likely also be an opportunity for members who wish to “sign off” on the commentary to also do so as part of a “consortium author” (i.e., “Autism PROMnet” as the last author on the list). More details to come once we’ve completed the first draft. 

Autism PROMnet Newsletter Coming Soon:

Starting in the next few months, the Autism PROMnet team is planning to put together a quarterly newsletter for group members, which includes updates on our initiatives, announcements, important new outcome research in the field, highlights of PROMs and training resources from our repository, researcher profiles, and more. We’re really excited to share this with you all, as we think this has the potential for a lot of “value added” for those who are a part of PROMnet. And if you happen to have any ideas of other things that you’d like to see in the newsletter, feel free to contact me and/or Ellie Kaplan-Kahn (KAPLA...@chop.edu) with your thoughts.

Some New PROMs to Try Out in 2023:

Lastly, I wanted to highlight a few recently-published studies by Mirko Uljarević, Thomas Frazier, and colleagues, which introduce some new (proxy-report) PROMs for use in the pediatric autism population. These include the Dimensional Assessment of Restricted and Repetitive Behaviors (DARB) [think RBS-R but longer and substantially more comprehensive], Executive Functioning Scale (EFS) [think BRIEF but shorter (and free)], and Autism Symptom Dimensions Questionnaire (ASDQ) [think SRS-2, but free/open-source, broader in content scope (less densely-sampled items), and about the length of an SCQ]. The DARB study has also recently been covered by Spectrum, as seen HERE. The first two measures (DARB, EFS) are available directly from the authors (mirk...@stanford.edu), and a version of the ASDQ can be found attached to this email. 

That’s all I’ve got for the moment, but do feel free to continue the discussion in the google group (or email the listserv for any other topic related to outcome measurement in autism) by emailing autism-...@googlegroups.com. Wishing you all a great 2023, and stay tuned for more updates soon. 

All the best,

Zack (on behalf of the rest of the PROMnet team)

____________________________________________________________________

Zachary J. Williams (he/him/his)
M.D./Ph.D. Candidate (Year 6)

Vanderbilt University Medical Scientist Training Program

Neuroscience Graduate Program / Department of Hearing & Speech Sciences

Affiliate, Frist Center for Autism and Innovation and Vanderbilt Kennedy Center

Co-chair, INSAR Autistic Researchers Committee

Autistic Researcher Review Board (ARRB) Co-chair, Autism Intervention Network on Physical Health (AIR-P)

Administrator and Co-Founder, Autism PROMnet 

Yale University class of 2017│B.S. Psychology (Neuroscience Track)

zachary.j...@vanderbilt.edu

Google Scholar / ResearchGate / ORCiD / Twitter (@QuantPsychiatry)