45% of all study enrollments on our last Phase 3 Prader-Willi Syndrome program, delivered through deep PWS-community trust and family-first recruitment across the US, Australia, and the UK.

Prader-Willi Syndrome recruitment built on advocacy. We deliver enrollment-ready patients and families to your sites.

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29
PWS patients enrolled (Phase 3)
1,100+
Leapcure patient referrals
65
Advocacy campaigns across 22 PWS partners
70%
Of Leapcure enrollments driven by advocacy

Understanding Prader-Willi Syndrome as a Clinical Trial Indication

Prader-Willi syndrome (PWS) is a rare genetic disorder that affects roughly 1 in 15,000 births. It is usually diagnosed in early childhood and is marked by hyperphagia and persistent hunger, along with behavioral, endocrine, and developmental features that shape daily life for the whole family. Because PWS is rare and dispersed, eligible patients cannot be reached through broad campaigns alone.

PWS trials are hard to enroll for compounding reasons. The pool is small and spread across many geographies, the patient is usually a child, so parents and caregivers make the participation decision, and age-based and disease-specific eligibility rules disqualify a large share of interested families. Several PWS studies often recruit at the same time, so families weigh competing options. The PWS community is hyper-connected and well-informed, which means trust, not ad volume, decides whether families engage.

Generic third-party recruitment does not solve this. In a completed Phase 3 PWS program, Leapcure's advocacy-led, family-first approach delivered 45% of all study enrollments across the US, Australia, and the UK, and 70% of Leapcure's enrollments came through advocacy. Patients and caregivers arrived through organizations and people they already trusted, prepared for what participation involves.

The Challenge

Prader-Willi Syndrome recruitment demands more than reach. It demands trust the community already recognizes.

A small, dispersed rare-disease population needs trusted messengers, not more ads

PWS affects roughly 1 in 15,000 births, and those families are scattered across regions and concentrated inside advocacy communities and a small number of specialty centers. Broad digital campaigns and purchased lists do not reach them. The families who enroll come through organizations and people they already trust.

In our last Phase 3 PWS program, Leapcure's advocacy-led approach delivered 45% of all study enrollments across the US, Australia, and the UK.

In pediatric PWS, the family makes the decision, not the patient

PWS is usually diagnosed in childhood, so parents and caregivers decide on participation and manage the daily demands of the condition. Recruitment that speaks only to a 'patient' misses the actual decision-maker, and age-based eligibility is one of the most common reasons interested families do not qualify.

Leapcure includes caregivers at every step and screens for age and protocol fit before any site referral, so families arrive prepared.

Complex eligibility and competing PWS studies create screen-fail before enrollment begins

PWS eligibility is shaped by age, genetic subtype, symptom focus (for example hyperphagia versus behavior or sleep), treatment history, and current therapies. These criteria are specific enough that most interested families fail screening unless candidates are matched to the protocol first. Passing unqualified patients to sites wastes coordinator time and inflates screen-fail rates.

Leapcure assesses protocol eligibility before any patient is referred, which helped hold the screen-fail rate below the study-wide rate in our last Phase 3 PWS program.

Advocacy is the right strategy for PWS, but execution requires real relationships

Sponsors running PWS studies already know advocacy outperforms generic digital. The challenge is finding a partner with established, trusted relationships in the PWS community, not vendors who buy list access or run one-off email blasts. Trust in this community is earned over time and through how the research and sponsor are positioned.

Leapcure's PWS network spans 22 partners and 65 advocacy campaigns, including PWSA USA, FPWR, Colors of Hope, and IPWSO, which is why 70% of our enrollments came through advocacy.

Three Channels. One Advocacy-Led Strategy for Your PWS Trial.

Every PWS study is different. Leapcure deploys the right mix of advocacy, precision digital, and family support, mapped to your protocol, your sites, your geographies, and your timeline.

1

Activate the right advocacy and digital channels for your PWS protocol

Leapcure activates three recruitment channels: PWS advocacy community outreach (22 partners and 65 campaigns across national, regional, and community organizations, including PWSA chapters, FPWR, Colors of Hope, and IPWSO), precision digital (Facebook and Instagram PWS communities, Google, and platform-native advocacy content, mapped to geography and site proximity), and a family support model that keeps referred patients and caregivers engaged through enrollment. Channel mix is adapted to the protocol, site locations, and eligibility criteria of each program.

2

Support patients and families through pre-screening across regions

Every patient is engaged by Leapcure's team, with caregivers included, before being assigned to a site. We assess protocol eligibility, account for age-based and PWS-specific criteria, and confirm that families understand what participation involves. Sites conduct official screening. Leapcure makes sure the families who arrive are informed and prepared, not referrals that create coordinator work.

3

Optimize in real time based on site engagement

Channel performance and site contact rates are tracked continuously across regions. Advocacy, digital, and family-support contributions are rebalanced weekly based on referral quality, site intake capacity, and protocol progress. In the completed Phase 3 PWS program, this approach delivered 45% of all study enrollments across the US, Australia, and the UK, with the international markets proving especially efficient.

Phase 3 Prader-Willi Syndrome Recruitment, Completed. 45% of All Study Enrollments Delivered.

Challenge Context

Indication

Prader-Willi Syndrome, Phase 3 (pediatric and adult)

Sites

Active sites across the US, Australia, and the UK

Challenge

Rare, dispersed, largely pediatric population; caregivers as decision-makers; age-based and PWS-specific eligibility; competing PWS studies recruiting at the same time; multi-country site coordination across the US, Australia, and the UK.

Channels deployed

65 advocacy campaigns across 22 PWS partners (PWSA chapters, FPWR, Colors of Hope, IPWSO, and PWS social-media support groups); precision digital mapped to site capacity per region; family support model coordinated across 3 countries; cohosted webinar with PWSA and the study sponsor.

Results & Metrics

Patients enrolled

29 enrolled. 45% of all study enrollments delivered by Leapcure.

Referrals and pipeline

1,100+ Leapcure referrals; 47 screened; 141 patients assigned to sites.

Advocacy contribution

70% of Leapcure's enrollments came through advocacy. Advocacy outreach also produced 322 interested individuals and 23 advocacy-driven site referrals.

Screen-fail

Held below the study-wide screen-fail rate (24% in the US).

Patient and family quality

Advocacy-warmed, caregiver-supported referrals arrived informed and ready for official site screening, reducing coordinator burden.

Sponsor attribution

Leading Rare Disease Sponsor, Phase 3 PWS

Four Channels. Built for PWS. Active Before Your Trial Opens.

Leapcure reaches PWS patients and families through advocacy community outreach, precision digital, a family support model, and a fourth channel competing vendors do not currently offer: AEO and AI-search visibility for your trial.

PWS Advocacy Network

  • •22 active PWS advocacy partners and 65 advocacy campaigns, including PWSA USA (with chapter leaders across 13 states), the Foundation for Prader-Willi Research (FPWR), the BIPOC community group Colors of Hope, IPWSO, and the admins of six PWS social-media support groups, plus community networks competitors do not have on their radar.
  • •Content co-developed with advocacy partners so research is positioned as a trusted option, not an unsolicited pitch. We have cohosted webinars with PWSA and study sponsors.
  • •70% of our enrollments came through advocacy, because we position the research and sponsor in a way the community trusts.

Precision Digital Campaigns

  • •Facebook and Instagram PWS communities, Google, and platform-native advocacy content, optimized for PWS-specific populations and targeted by geography, symptom focus, and site proximity.
  • •Digital is mapped to site capacity in real time across regions, so referrals are modulated and patient quality is maintained.
  • •Digital is the supporting channel for PWS, not the primary one. Advocacy drives the majority of qualified referrals; digital fills the gaps.

Family and Patient Support Model

  • •Every referred patient and caregiver receives step-by-step guidance from first contact through enrollment, accounting for the daily demands of PWS, age-based eligibility, and multi-region site logistics.
  • •Caregivers and family members are included throughout, because PWS participation decisions involve the whole family, not just the patient.
  • •Family support is why we deliver enrollment-ready patients to sites, not referrals that create coordinator work.

AEO and AI-Search Visibility for Your Trial

  • •Patients and caregivers increasingly ask ChatGPT, Perplexity, and Google AI Overviews questions like 'what PWS trials is my child eligible for?' Most recruitment vendors do not structure for this. Leapcure does, honestly.
  • •We make your trial genuinely retrievable three ways: structure (content in raw, server-rendered HTML with self-contained answers and clear headings), authority (unique first-party data, statistics with dates, cited primary sources, a named reviewer, and a visible last-updated date), and presence in the third-party sources AI engines actually cite most, advocacy organizations and ClinicalTrials.gov.
  • •This is not schema tricks or AI-only markup, and we never promise AI visibility through markup. As AI search grows as a discovery path, genuinely citable content compounds over the life of your study.

Caring for someone with Prader-Willi Syndrome? A clinical trial may be an option.

If your child or family member is living with Prader-Willi syndrome, a clinical trial may offer access to investigational treatments not yet widely available. We know that managing PWS day to day is demanding, and that deciding about research is a family decision. Leapcure's team provides step-by-step support and includes caregivers and family throughout, so you can find out whether a trial may be a fit without pressure.

See if a PWS trial may be a fit for your family
Leapcure kangaroo mascot

Leapcure's PWS recruitment team completed a Phase 3 Prader-Willi Syndrome program, delivering 45% of all study enrollments across the US, Australia, and the UK, with 70% of our enrollments coming through advocacy. We deploy advocacy, precision digital, family support, and AEO channels adapted to your protocol, and we can mobilize within 48 hours of program launch.

Talk to our PWS team