This page is intentionally separate from the family-facing prototype. Families do not see this dashboard. It is designed for pharma, biotech, CRO, and site teams working from permissioned, consented, and appropriately de-identified family-side data.
Program view for a hypothetical Duchenne trial portfolio. All numbers are prototype sample data. Cost figures are modeled estimates based on sponsor inputs and should be refined against each sponsor’s actual recruitment, screening, and site-cost assumptions.
Click a family profile to see consent status, referral readiness, trial qualifiers, missing data, and next action. Contact fields only appear when consent has been granted.
| Family ID | Matched Study | Fit Summary | Consent / Contact | Status | Next Action |
|---|---|---|---|---|---|
| FAM-1048 Age 10 • US Southeast | NorthStar Microdystrophin | 9/10 qualifiers met Needs genetic report upload | Referral consent signed Contact visible to site only | Screening scheduled | Confirm lab packet sent |
| FAM-2219 Age 15 • UK North | STRIDE Exon Skipping | 8/10 qualifiers met Mutation match confirmed | Referral consent signed | Referred to site | Site outreach due in 48 hrs |
| FAM-3155 Age 21+ • US Midwest | ADVANCE Supportive Care | 6/10 qualifiers met Cardiac history needs review | Information request only | Awaiting family confirmation | Send plain-language visit guide |
| FAM-4402 Age 8 • Canada | NorthStar Microdystrophin | Potential exclusion Prior gene therapy exposure | Referral consent signed | Not eligible | Route to alternative studies |
| Qualifier | Families Meeting | Needs Review | Common Missing Evidence |
|---|---|---|---|
| Confirmed Duchenne diagnosis | 88% | 9% | Genetic test report, clinic letter |
| Age band match | 76% | 0% | N/A |
| Ambulatory / non-ambulatory status | 64% | 21% | Recent functional assessment |
| Stable steroid regimen | 58% | 31% | Dose, start date, changes in last 6 months |
| 6-minute walk test range | 42% | 44% | Recent 6MWT date and distance |
| Cardiac / pulmonary readiness | 51% | 37% | Echo/MRI, PFT, medication list |
These signals are captured when a family views a trial but closes it without requesting information.
| Reason Family Did Not Request Info | Share of Declines | Interpretation | Possible Sponsor Response |
|---|---|---|---|
| Distance / travel burden | 31% | Site footprint may not match interested families. | Add satellite assessments, travel concierge, or local lab options. |
| Financial concern / reimbursement unclear | 22% | Families may not understand what is covered. | Make reimbursement language visible before referral. |
| Not sure eligible | 18% | Families may self-exclude because criteria are confusing. | Add plain-language qualifier checklist and site pre-screen option. |
| Visit burden / overnight concerns | 14% | Protocol schedule may feel too disruptive. | Break down each visit and flag overnight requirements early. |
| Risk / procedure concern | 9% | Families need more education around procedures. | Use glossary, videos, clinician Q&A, and caregiver guides. |
| Other / prefer not to say | 6% | Needs qualitative review. | Review open-text feedback monthly. |
Families are reading infusion and monitoring visits multiple times but not completing inquiry.
Drop-off increases when families see repeated dosing schedule.
Families want clarity on adult participation and cardiac criteria.
Prototype model showing how sponsor teams could compare traditional recruitment spend against DMD Pathways-supported identification, education, referral, and follow-through.
| Cost Component | Modeled Amount | What It Covers |
|---|---|---|
| Platform subscription / sponsor access | $45,000 | Program listing, dashboard, data views, reporting cadence |
| Family education and navigation content | $12,500 | Plain-language trial guide, visit breakdowns, glossary content |
| Referral coordination support | $18,000 | Consent capture, inquiry routing, site handoff, follow-up reminders |
| Travel/reimbursement visibility support | $8,750 | Reimbursement explanation, stipend routing, family FAQ |
| Screening readiness support | $19,700 | Missing records prompts, qualifier explanations, readiness checklist |
| Family ID | Contact Information | Consent Scope | Matched Study | Pipeline Stage | Action |
|---|---|---|---|---|---|
| FAM-1048 | Maria Reynolds Mother / caregiver maria.reynolds@example.com (615) 555-0148 Prefers text first • CST • weekdays after 3pm | Sponsor + site referral authorized Signed May 1, 2026 | NorthStar Microdystrophin | Screening scheduled | |
| FAM-2219 | David Patel Father / caregiver david.patel@example.co.uk +44 20 5555 2219 Prefers email • UK time • mornings | Sponsor + recruitment partner authorized Signed Apr 29, 2026 | STRIDE Exon Skipping | Referred to site | |
| FAM-3155 | Not exportable Family requested information only. Direct contact sharing not authorized yet. | Information only May re-consent later | ADVANCE Supportive Care | Awaiting family confirmation | |
| FAM-4402 | Amelia Chen Mother / caregiver amelia.chen@example.ca (416) 555-4402 Prefers phone • EST • evenings | Alternative study referral authorized Signed Apr 27, 2026 | NorthStar Microdystrophin | Not eligible |
| Date | Family ID | Action | Status | Audit Note |
|---|---|---|---|---|
| May 2, 2026 | FAM-1048 | Visit burden + reimbursement guide sent | Opened | Authorized under sponsor/site referral consent |
| May 1, 2026 | FAM-2219 | Genetic report requested | Pending | Medical-record authorization required before transfer |
A productized packet sponsors/sites can use to reduce site burden, prevent avoidable screen fails, and keep referral handoffs consistent.
| Age / region | Age 10 • US Southeast |
| Functional status | Ambulatory • 6MWT 355m reported |
| Steroid use | Stable corticosteroid regimen reported |
| Genetics | Confirmed Duchenne • mutation report requested |
Age range appears metAmbulation appears metGenetic report neededCardiac report pending
Family may require overnight lodging, accessible hotel options, mileage reimbursement clarity, and plain-language explanation of infusion/monitoring visits.
Requested information → consent signed → reimbursement guide opened → screening scheduled.
Prototype scoring model: eligibility match 40%, logistics feasibility 25%, engagement level 20%, record readiness 15%, adjusted for barrier risk.
| Component | Weight | Current Signal |
|---|---|---|
| Eligibility match | 40% | Strong |
| Logistics feasibility | 25% | Travel support needed |
| Engagement level | 20% | High |
| Record readiness | 15% | Missing reports |
Families who are close to matching but blocked by a fixable issue.
| Revenue Layer | What Pharma Pays For | Why It Matters |
|---|---|---|
| Basic visibility | Study listing + aggregate interest analytics | Creates qualified awareness |
| Recruitment intelligence | Qualifier matching, barrier analytics, funnel reporting | Improves conversion and planning |
| Referral conversion | Consented contacts, engagement center, site handoff packets | Reduces site burden and wasted outreach |
| Strategic insights | Near-miss analysis, protocol feasibility insights, cost-per-patient modeling | Supports better trial design and faster enrollment |
| Family-Side Input | Sponsor-Facing Use | Visibility Rule |
|---|---|---|
| Age, country/region, distance to site, language, accessibility needs | Geographic feasibility, visit support planning, language/accessibility support | De-identified in aggregate; individual detail only after consent |
| Diagnosis confirmation, mutation/exon, disease stage | Eligibility matching, protocol feasibility, recruitment forecasting | De-identified unless referral consent signed |
| Steroid use, prior therapies, gene therapy exposure, cardiac/pulmonary history | Pre-screening readiness, exclusion risk, medical review prompts | Restricted clinical field; role-based access |
| 6-minute walk test, North Star score, wheelchair use, arm function | Functional qualifier matching and burden assessment | De-identified; individual shared only with consent |
| Viewed trial pages, visit details opened, glossary terms clicked | Interest signal, education needs, confusing criteria analysis | Behavioral analytics in aggregate |
| Request-info form and consent | Referral to sponsor/site/recruitment contact | Identifiable information shared only according to consent |
| Decline reason popup | Barrier analytics, protocol/access improvement insights | Aggregate unless family chooses to provide follow-up contact |
Demo onboarding page for sponsors. The goal is to capture enough information to power credible cost-per-patient and funnel analytics without asking the sponsor to complete a full finance workbook.
| Metric | Modeled Estimate | How It Is Calculated |
|---|---|---|
| Cost per interested family | $0 | Total modeled spend ÷ interested families |
| Cost per qualified lead | $0 | Total modeled spend ÷ qualified leads |
| Cost per screened patient | $0 | Total modeled spend ÷ screened patients |
| Cost per enrolled patient | $0 | Total modeled spend ÷ enrolled patients |
| Estimated avoided screen-failure waste | $90,000 | (Baseline screen failure rate − projected DMD Pathways screen failure rate) × screened patients × estimated screen failure cost |
| Modeled avoided screen failures | 9 | Screened patients × modeled reduction in screen failure rate |
This gives pipeline-tier subscribers an easy way to keep DMD Pathways updated without requiring full EDC integration on day one.
Clickable prototype layer for paid sponsor pipeline management, double enrollment verification, site confirmation, billing eligibility, and internal DMD Pathways updates.
| Patient ID | Match | Status | Site | Engagement | Verification | Actions |
|---|---|---|---|---|---|---|
| DP-0142 Age 19 • UK | 78% | Pre-Screen Scheduled | London | High | Pending | |
| DP-0198 Age 10 • US | 92% | Screened | Boston | Medium | Pending | |
| DP-0221 Age 15 • EU | 85% | Enrolled | Paris | High | Needs site confirm |
| Date | Patient | Action | Owner | Note |
|---|---|---|---|---|
| May 5, 2026 | DP-0221 | Sponsor marked enrolled | Sponsor user | Awaiting site confirmation |
| May 4, 2026 | DP-0198 | Screened | Site coordinator | Medical review pending |
Age 19 • Early non-ambulatory • Exon 51 • Near-match candidate • Travel support likely needed
Pending sponsor confirmation.
Send site verification request after sponsor confirmation.
Billing unlocks only after sponsor + site confirmation.
For pipeline-tier subscribers: sponsor updates feed back to DMD Pathways so your team can keep family navigation, site handoff, and billing records current.
Simple external page a site coordinator could access from a secure email link.
Sponsor-facing individual profile. In production, this view would be permissioned, audited, and governed by consent and privacy requirements.
| Field | Value |
|---|---|
| Age / region | Age 10 • US Southeast |
| Diagnosis / genetics | Confirmed Duchenne • exon details uploaded pending review |
| Functional status | Ambulatory • 6MWT reported within last 6 months |
| Steroid use | Stable daily regimen reported |
| Key support needs | Overnight lodging, wheelchair-accessible hotel, mileage reimbursement clarity |
| Field | Value |
|---|---|
| Primary contact | Maria Reynolds |
| Relationship | Mother / caregiver |
| maria.reynolds@example.com | |
| Phone | (615) 555-0148 |
| Preferred contact | Text first; weekdays after 3pm CST |
| Consent scope | Share with sponsor and designated trial site for pre-screening/referral follow-up |