Foundation Hub, Questionnaires & STARR

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Foundation Hub

Gene-specific views across 14 foundations: STXBP1, SNAP25, MECP2, SCN2A, SCN1A, SYNGAP1, GRIN2B, CHD2, TCF4, SHANK3, ARID1B, DYRK1A, ADNP, PEX10.

Five tabs per foundation

• Data Sync — connect your profile to the foundation's registry.
• Questionnaires — all active patient registries and natural history studies.
• Resources — vetted links and downloads per gene.
• Infographics — visual explainers for parents.
• Research Data Sharing — pipeline pharma and academic partners, with the "Pipeline Ready · Awaiting Partnership Agreements" honesty rail until agreements land.

Nothing is shared with anyone until you explicitly consent. Seeing a partner name in the Research Data Sharing tab does not mean your data is flowing to them. Partnership agreements gate the flow; your consent gates specific transfers.

Questionnaire Wizard

31 registered studies pre-filled from your profile and phenotype log. Every field carries a status badge: From profile (green), Needs review (amber), or Please enter (gray). Generates a DOCX prep sheet, drafts an inquiry email, and sets a follow-up reminder.

STARR Visit Readiness Card

For STARR-family studies (Helbig et al., NCT06555965). A readiness dashboard that shows "X of 48 measures captured" with a progress bar and 10 color-coded domain pills. Tells you what's missing before the study visit, not after.

Why it exists

Enrollment friction — not scientific interest — is often the rate limit for rare-disease studies. ARIA reduces a typical 90-minute form to a 15-minute review.