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StemCell Longevita

Registry protocol and data dictionary

International Patient Outcomes Registry

The protocol, definitions and reporting rules for our prospective outcomes registry — published before the data, so the method cannot be adjusted to flatter the result.

Edition:
Protocol v1.0, first data cut scheduled 2027
Published:
Update cycle:
Annual data release after audit
Licence:
CC BY 4.0 with attribution

Do you publish your patient outcomes?

We publish the registry protocol now and the outcome figures only after the first audited data cut in 2027. The registry records diagnosis category, treatment pathway, follow-up completion, adverse events and patient-reported outcome measures. Publishing the method before the numbers is deliberate: it prevents definitions being adjusted after the fact to make results look better.

Key facts

Design
Prospective, consent-based, single centre
First data release
Scheduled 2027, after audit
Core outcomes
Adverse events, follow-up completion, PROMs
PROM instruments
Condition-appropriate validated scales
Denominator rule
All consenting treated patients, including those lost to follow-up
Status today
Protocol published; no outcome figures claimed

What we know

  • A registry that reports its denominator and its loss-to-follow-up rate can be assessed by a reader; one that reports only satisfied patients cannot.
  • Adverse-event capture is only meaningful when the collection window and definitions are fixed in advance.

What remains uncertain

  • Registry data is observational and uncontrolled; it cannot establish that a treatment caused an improvement.
  • Follow-up completion in international cohorts is difficult, and low completion will limit what the first release can say.

Why the protocol is published before the data

Clinics routinely quote success rates with no denominator, no follow-up window and no adverse-event definition. Those numbers cannot be checked, and they are the main reason patients cannot compare providers.

Publishing definitions first means the 2027 release can be judged against a fixed standard. If follow-up completion is poor, the report will say so.

Data dictionary

Registry variables and definitions
VariableDefinitionCollected at
Diagnosis categoryGrouped clinical category, not marketing indicationEnrolment
Treatment pathwayProduct, dose band, route, session countTreatment
Adverse eventAny untoward medical occurrence, graded by severity0–30 days and each follow-up
Serious adverse eventDeath, hospitalisation, disability or life-threatening eventContinuous
Follow-up completionProportion of scheduled reviews completed3, 6, 12 months
PROM scoreValidated condition-appropriate instrumentBaseline, 3, 6, 12 months

Reporting rules

  • Every consenting treated patient enters the denominator, including those lost to follow-up
  • Loss to follow-up is reported as a figure, never excluded silently
  • Adverse events are reported by severity, not summarised as 'well tolerated'
  • No per-condition efficacy claim is made where the group is smaller than the pre-set minimum
  • Data cuts are audited before publication and the audit date is printed

Questions about this report

Because a defensible rate needs a fixed denominator, a defined outcome and completed follow-up. Until the first audited cut, any figure would be marketing rather than data.

Yes. The reporting rules commit to publishing follow-up completion and adverse events regardless of what they show.

Consenting treated patients can enrol at assessment. Participation is voluntary and can be withdrawn.

How to cite this report

StemCell Longevita (2026). International Patient Outcomes Registry: protocol and data dictionary v1.0. Istanbul.

Reuse is permitted under CC BY 4.0 with a link back to https://stemcelllongevita.com/reports/international-patient-outcomes-registry. Corrections: contact the medical office.

Compiled by the StemCell Longevita medical office. Medically reviewed by Prof. Dr. Erdal Karaöz Team. Published . Method and definitions: editorial and evidence policy. This report is information about our own process and pricing, not medical advice and not a promise of clinical benefit.

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