International Consortium on Newborn Sequencing

Nonprofit profile at a glance

EIN
991893360
IRS 990 coverage
2023–2024
Forms available
Form 990 2024
Location
Charlestown, MA, USA
Phone
6177679191
Rating
47
Verdict
MIXED
Rating confidence
Moderate
Sector
Professional Societies, Associations

Reported finances

Revenue
$405,799
Expenses
$331,457
Assets
$181,967
Liabilities
$4,077

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

3 people listed

Highest reported compensation

  • Nicolas Encina (Executive Dir.): $215,385 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Advance the field of newborn sequencing to be used as a preventative screening tool at population levels. We are a global body that unites leading researchers, technologists, clinicians, and policy experts to work on advancing common interests, solving global challenges, and consolidating learnings and evidence.

What it reported doing in 2024

1 Annual Conference with 400-500 attendees, of which are clinicians, policy and economics experts, patients, and advocacy.1 Consortium meeting per month with =100 members attending every month. Scientific discussions and presentations.5 Subcommittee activities, consisting of volunteer time by global experts working on topics ranigng from gene lists, policy, economics, data sharing, and conference coordination.

Operating model

Revenue model
Donor-supported. 67% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

MIXED - The strongest available result is that reported spending and fundraising are generally efficient. A relatively small share of available resources goes toward mission work and few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence.

Rating breakdown

  • Financial Efficiency: 42
  • Transparency & Controls: 55
  • Accountability: 50
  • Sustainability: 46
  • Growth: 20

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 40.8%; rating input score 41
  • Program expense ratio: 50%; rating input score 50
  • Fundraising efficiency: $4.63 raised per $1 spent on fundraising; rating input score 20; 20th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 90.9%; rating input score 91; 13th percentile among comparable filings
  • Pay-setting controls: 0 of 6 controls in place; rating input score 0
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Missing
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Limited
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 66.7%; rating input score 67; 18th percentile among comparable filings
  • Governance controls: 2 of 8 controls in place; rating input score 25
    • Conflict-of-interest policy: Fail
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 18.3%; rating input score 72; 72nd percentile among comparable filings
  • Total-asset coverage ratio: 0.55; rating input score 26; 26th percentile among comparable filings
  • Liabilities to assets ratio: 0.02; rating input score 39; 39th percentile among comparable filings
  • Officer compensation ratio: 65%; rating input score 2; 2nd percentile among comparable filings

Growth

  • Program expense growth: -46.8% per year; rating input score 0; 2nd percentile among comparable filings
  • Revenue growth: -0.5% per year; rating input score 0; 22nd percentile among comparable filings
  • Asset growth: 13.7% per year; rating input score 100; 75th percentile among comparable filings

Details

  • Where the money goes: 40.8% of revenue deployed · 50% of spending went to programs
  • Governance: 2 of 3 board members independent · 2 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $166K in reported program spending
  • Leadership: top reported pay $215K · 3 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 22 of 23 current checks pass · 1 finding to review
  • Schedules: 4 filed schedules · includes executive pay
  • Filing history: 2 filing years from 2023 to 2024
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Moderate — Financial Efficiency: Mission deployment rate scored 41/100.
  • High — Transparency & Controls: Pay-setting controls scored 0/100.
  • Review — Financial Efficiency: Program expense ratio scored 50/100.
  • High — Accountability: Governance controls: 5 of 7 not reported.
  • High — Financial Efficiency: Fundraising efficiency scored 20/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • High — Sustainability: Total-asset coverage ratio scored 26/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • High — Sustainability: Officer compensation ratio scored 2/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 39/100.