Rare disease research

The rarest resource is the participant.

Rare disease research asks a lot of the people who make it possible. Delve helps study teams support participants from study start through study completion, reducing friction and helping people stay connected throughout the study.

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Study participant completing a diary at home

In rare disease research, every participant matters.

Eligible populations are small. Participants and caregivers carry real study burden. Distance and logistics make participation hard to sustain. Small points of friction compound, and in a study this size, each one carries weight.

  1. Complex study demands
  2. Participation burden
  3. Missed study activities
  4. Declining engagement & compliance
  5. Potential dropout
  6. Study impact

Delve helps study teams identify and address participant friction earlier, before it becomes a participation problem.

How we do it →

If participants are the rarest resource, how we support them matters.

Caregiver helping a participant complete a study task on a tablet at home
Catching drift early

Participants rarely leave a study all at once. They drift.

By the time it shows up as a dropout, it’s too late.

The challenge

A rescheduled visit, an unanswered question, a moment of doubt. Small signals build up between visits, often before anyone at the site sees them.

How Delve helps

Delve watches for the early signs between visits and steps in before a participant is lost.

Supporting caregivers

In rare disease, caregivers often carry the study.

The appointments, the devices, the diaries, the questions.

The challenge

Much of the work of participation falls on caregivers who are already managing complex care at home.

How Delve helps

Delve supports caregivers directly, in their language and on their schedule, so participation stays manageable for the whole family and your study gets complete, high-quality data.

The participant experience

A protocol says what needs to happen. Participants experience what it takes.

Closing that gap is where a better experience begins.

The challenge

What a protocol requires and what participation actually takes aren’t always the same thing.

How Delve helps

Delve designs participant support around the realities of the people taking part.

Concierge-as-a-Service™

What does patient support really mean?

A dedicated specialist for every participant.

The challenge

Questions, scheduling, technology, and the moments in between all need someone to own them.

How Delve helps

Every participant has a dedicated Delve specialist who knows the protocol and triages everything. We go above and beyond to make participating possible, so sites can stay focused on care.

eCOA & ePRO

Your data is only as strong as its completion rate.

Reminders alone get ignored.

The challenge

Missed entries leave gaps in endpoints, and automated reminders on their own don’t close them.

How Delve helps

Delve pairs multilingual digital assessments with real people who follow up on missed entries, so your endpoints stay complete and your data stays submission-ready.

Protect the participant journey, from study start to study completion.

Delve connects the participant experience to study execution. Not a collection of services around the trial, but one layer of support that moves with each participant.

  1. Welcome them

    Onboarding & study start

    Help participants and caregivers get set up with apps and devices, understand what to expect, and know who to call.

  2. Support them

    Concierge-as-a-Service™

    A consistent human point of support for questions, study logistics, technology issues, and other moments of friction.

  3. Keep them connected

    Engagement & follow-up

    Maintain communication throughout the study and address issues that could affect continued participation.

  4. Keep them on track

    Compliance & study support

    Identify potential gaps early and help participants stay connected to study requirements.

  5. Beyond the site

    Remote participation

    Support participation between visits through connected devices, wearables, remote monitoring, and ongoing communication.

  6. Around the site

    Site & operational support

    Reduce operational burden through data entry, monitoring, administrative support, and other study activities.

Start a conversation

Welcome them. Support them. Keep them connected.

Tell us about your rare disease program. We'll walk through where participant friction is most likely to show up and how Delve can support participants and sites through it.

  • A review of your study’s participant journey
  • Where friction is likely to affect retention and compliance
  • How support can scale without adding site burden

Caregiver-aware compliance models, retention, and human support for rare disease trials.

Therapeutic

Rare Disease Trials: The Caregiver Factor

Compliance models built around caregivers — the most overlooked stakeholder in rare disease trials.

 Retention

Patient Retention in Clinical Trials

Operational playbook for keeping patients enrolled and engaged through every visit.

 Retention

Concierge Support: When It Matters Most

Where human support changes the trajectory of a trial — and where it does not.
Explore the full Knowledge Hub →