🧬 From Signals to Solutions

NeuroRare Open Science Challenge

Hosted by Project 8p Foundation

September 9, 2025

Project 8p is opening our multi-omics natural history dataset—plus curated external control datasets for benchmarking—to accelerate discovery in neurodevelopmental rare disease.

Explore and analyze deeply phenotyped cohorts inside our analytics-ready workspace in the Onya Portal, a platform built in a mission driven way to foster collaboration and impact.

Challenge Overview

This Open Science Challenge invites you to explore de-identified data:

  • Whole genome sequencing
  • Transcriptomics & methylomics
  • Structural MRI 
  • Microbiome
  • Mitochondrial function
  • Blood-based markers of inflammation and neurodegeneration
  • Clinical phenotypes (motor, communication, GI, seizure, autism, etc.)
  • Preclinical Models: Organoids, iPSC cells and derived models

 

Tackle analytical tracks including:

  • 📈 Symptom-Trajectory Prediction
  • 🧬 Genotype-to-Phenotype Mapping or Transcriptome-to-Phenotype Mapping
  • 🧠 Extend Early Evidence of Accelerated Aging
  • 🔬 Biomarker Discovery

Top submissions will be showcased by Project 8p with monetary prizes and opportunities for future collaboration including joint publications.

More details to follow, register your interest now to be added to our email list and receive updates!

How to Participate
Step 1: Register Your Interest by October 31, 2025

Get early updates, FAQ sessions, and preview access to the portal.

Step 2:  Review & Sign the Researcher Agreement

Participation requires acknowledgment and agreement to our data use terms, including a strict non-reidentification policy for genetic or clinical data. The Researcher Agreement will be sent to you by email after you complete registration. 

Step 3: Enter the Portal to Submit a Proposal  

Once the Onya Portal is live, you’ll be invited to:

  • Explore datasets through the interactive workspace
  • Select from a list of challenge themes and analytical tracks
  • Submit your formal project plan
Questions

Reach out anytime at Portal@project8p.org for clarifications or support.

We’ll also host an FAQ session in October. Invites to the FAQ session will be sent to all who register. 

Frequently Asked Questions (FAQ)

When will the data be available?

A preview version of the Onya Portal will go live in the fall of 2025, with tools to query and explore the dataset.

Is there a cost to participate?

No, participation is free. Just register, agree to the data use terms, and propose a project.

Can I publish or present the data?

Yes — we encourage publication and presentation! We have an acknowledgement statement required that will be sent in the confirmation materials after Open Science Challenge project submission.

What makes this challenge unique?

It centers patient-generated data in the most comprehensive 8p disorder datasets available—while aligning with FAIR and open science principles.

Includes cross-system data on:

  • CNS & neurodevelopment
  • GI function & microbiome
  • Immunological & metabolic markers
  • Behavioral & cognitive outcomes
  • Matched multi-omics files for select individuals
Community-Powered Science

We thank the 8p heroes, families, and clinicians whose contributions made this dataset possible. This initiative reflects Project 8p’s commitment to patient-centric research, open collaboration, and accelerated real impact.

Together Towards Treatment

🧬 Project 8p Foundation

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.