Patient groups increasingly run the registry, the burden-of-illness survey and the natural history study themselves, then hand the data to researchers and sponsors. Capture lets a small staff do that with real consent, coded participant IDs and an audit trail, without an IT department or an enterprise contract.
Free sandbox · No credit card · 21 CFR Part 11 aligned
Enrolled members
412
Consented
398
Annual survey complete
71%
Open queries
9
97%
71%
47%
What advocacy organizations need from a study system
The role
Patient advocacy organizations have moved a long way from newsletters and helplines. Many now curate patient registries, run surveys on diagnosis delay or treatment burden, contribute patient-reported outcome data to natural history studies and sit on trial design committees. Regulators and funders encourage patient involvement, and sponsors often approach an advocacy group to help recruit. In each case, the organization is becoming a steward of sensitive health data, even if it has never thought of itself as a research sponsor.
That steward role needs structure. Who owns the data, who can see identifiable details, what consent covers sharing with a university or a company, and how members can withdraw are decisions to take before the first member signs up. The software cannot take them for you, but it can enforce them: role-based access with PII segregation (coordinators see names, researchers see coded IDs), eConsent with an e-signature record, and a field-level audit trail. For the study design side, see natural history study software, EDC for registry studies and EDC for PROMs registries.
Funders and foundations have their own needs; the two pages on medical charities and foundations and rare disease foundations describe those. This page is for the patient-led organization itself.
Enrolment
Create a study-specific enrolment QR code, put it on a poster or a conference slide and let members consent and complete the baseline survey on their own phone. Staff review who has consented and who still needs a follow-up.
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Print it on posters and clinic flyers
Build the baseline survey and consent in the sandbox, test it on a few volunteers' phones and open the export before you launch. Free, every feature.
Needs to features
| Need | Why it matters | Where it lives in Capture |
|---|---|---|
| Member consent | Sharing with third parties must be explicit | eConsent with signed PDF export |
| Surveys and diaries | Long-term burden and symptom tracking | ePRO with reminders, no app |
| Staff and volunteer access | Different people see different things | Role-based access, PII segregation |
| Data for partners | Researchers want a clean dataset | CSV/Excel with data dictionary; audit trail export |
| Small budget | No IT and no enterprise contract | Free sandbox; pay only to go live |
Capture is a data capture platform. It does not provide legal agreements, ethics approval or a patient community portal.
Getting started
Write the one-page purpose of the registry or survey and who will use the data.
Say what is collected, who sees it and how members can withdraw.
Create the baseline form, diaries and consent; test with volunteers.
Whether your project needs review depends on its purpose and your jurisdiction.
Go live and invite members. Paid plans apply from go-live; see pricing.
Yes. Forms, diaries and consent are built in a visual editor, and members join from a phone link or QR code. Support is by email, with documentation and video tutorials.
Your consent and protocol define withdrawal. Capture records changes with a full audit trail; clinical data is soft-deleted only. Agree the process with your adviser first.
You can export CSV or Excel with a data dictionary and an audit trail. Sharing terms are your decision and need an agreement.
The sandbox is free with every feature and no time limit. Paid plans apply when you go live. See pricing.
Capture provides 21 CFR Part 11-aligned controls such as an audit trail, e-signatures and role-based access. Validated use is shared with the sponsor.
Keep exploring
Natural history study software
Long-term observation.
EDC for registry studies
Registry design.
Clinical trial software for rare disease foundations
Rare disease funding.
Clinical trial software for medical charities
Charity funders.
QR-code participant enrollment
Join from a poster.
eConsent
Signed consent on a phone.
Free sandbox with every feature. No credit card, and you pay only when you go live with real participants.