The Parent Project for Muscular Dystrophy Research Inc

What it reported doing in 2025

Researchppmd's research program identifies and funds the most promising near- and long-term therapeutic strategies for duchenne and becker muscular dystrophy. We invest across the development pipeline-from basic science to clinical application-while actively stimulating new research to keep the therapeutic pipeline robust. Through initiatives like the duchenne drug development roundtable, we foster industry collaboration to harmonize the clinical trial landscape and accelerate progress.in addition to funding academic and pre-clinical research, our venture pathways program invests in early-stage biopharmaceutical companies to drive the development of novel treatments for duchenne and becker muscular dystrophy.the duchenne registrythe duchenne registry remains the largest patient-reported registry for duchenne, becker and carrier females. Over 6,000 people from more than 125 countries have joined since 2007, contributing over 18 years of data. Registry data has been exported for researchers over 80 times, and the registry has been used to identify and connect people with duchenne and becker to more than 100 clinical trials and research studies. Ppmd also manages complementary initiatives: the interchange provides a central patient-and clinician reported data warehouse so all types of duchenne data from various sources, including the duchenne registry, academic consortia, real-world data from electronic health records (ehrs), and post-market studies from industry partners, are collected and analyzed in one place. By de-siloing data, the interchange delivers a more complete picture of duchenne and becker and helps clinical researchers and partners in therapy development address common research challenges. Thus, researchers can effectively conduct their work and accelerate scientific discovery and patient access to new therapies.careppmd's care program ensures individuals with duchenne have access to expert clinical teams, approved therapies, and comprehensive multidisciplinary care across their lifespan. We identify gaps in care and work collaboratively with global healthcare providers to close those gaps and improve outcomes.our certified duchenne care center (cdcc) program certifies care centers that meet rigorous standards aligned with the duchenne care guidelines. These centers commit to delivering consistent, high-quality care based on best practices.

Financial Efficiency

• Mission deployment rate: 86.8%; rating input score 87
• Program expense ratio: 87.7%; rating input score 88
• Fundraising efficiency: $12.87 raised per $1 spent on fundraising; rating input score 41; 41st percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.7%; rating input score 95; 27th percentile among comparable filings
• Pay-setting controls: 2 of 6 controls in place; rating input score 33
  • Compensation committee: Pass
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Missing
  • Board or committee approval: Pass
• Foreign activity oversight: 0 of 8 controls in place; rating input score 0
  • Claims monitoring procedures: Limited
  • Requires narrative reports: Limited
  • Conducts field audits: Limited
  • May suspend future funding: Limited
  • Requires financial reports: Limited
  • Conducts site visits: Limited
  • Requires grant agreements: Limited
  • May require repayment: Limited
• Grant itemization coverage: 100%; rating input score 100; 76th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: 1.3%; rating input score 30; 30th percentile among comparable filings
• Total-asset coverage ratio: 1.07; rating input score 31; 31st percentile among comparable filings
• Liabilities to assets ratio: 0.09; rating input score 67; 67th percentile among comparable filings
• Officer compensation ratio: 13.2%; rating input score 15; 15th percentile among comparable filings

Growth

• Program expense growth: 6.2% per year; rating input score 100; 48th percentile among comparable filings
• Revenue growth: 5.9% per year; rating input score 100; 49th percentile among comparable filings
• Asset growth: 11.8% per year; rating input score 100; 74th percentile among comparable filings