NCT01336790

Brief Summary

The purpose of the International Lymphatic Disease and Lymphedema Patient Registry and Biorepository is to collect health information in order to study the disease classification, natural history, and impact of Lymphatic Disease, Lymphedema and Related Disorders and its treatments and medical outcomes.

Trial Health

43
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
5,000

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Mar 2009

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

March 1, 2009

Completed
2.1 years until next milestone

First Submitted

Initial submission to the registry

April 7, 2011

Completed
11 days until next milestone

First Posted

Study publicly available on registry

April 18, 2011

Completed
13.6 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 1, 2024

Completed
1 year until next milestone

Study Completion

Last participant's last visit for all outcomes

December 1, 2025

Completed
Last Updated

November 22, 2023

Status Verified

November 1, 2023

Enrollment Period

15.8 years

First QC Date

April 7, 2011

Last Update Submit

November 20, 2023

Conditions

Lymphedema

Keywords

Lymphatic diseaseLymphedemaLymphangiomatosisLymphangiectasiaProtein-losing enteropathyVascular Anomalies

Outcome Measures

Primary Outcomes (1)

  • prevalence of lymphatic disease

    15 years

Secondary Outcomes (1)

  • socioeconomic impact of lymphatic disease

    15 years

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Participants (national and international participants) with the presence of lymphatic disease.

You may qualify if:

  • Presence of lymphatic disease

You may not qualify if:

  • None

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Stanford University School of Medicine

Stanford, California, 94305, United States

RECRUITING

Related Links

MeSH Terms

Conditions

LymphedemaLymphatic DiseasesLymphangiectasisProtein-Losing EnteropathiesVascular Malformations

Condition Hierarchy (Ancestors)

Hemic and Lymphatic DiseasesIntestinal DiseasesGastrointestinal DiseasesDigestive System DiseasesCardiovascular AbnormalitiesCardiovascular DiseasesCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Officials

  • Stanley G Rockson

    Stanford University

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Stanley Rockson, MD

CONTACT

(650) 7231396

Study Design

Study Type
observational
Observational Model
CASE ONLY
Time Perspective
OTHER
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Allan and Tina Neill Professor of Lymphatic Research and Medicine

Study Record Dates

First Submitted

April 7, 2011

First Posted

April 18, 2011

Study Start

March 1, 2009

Primary Completion

December 1, 2024

Study Completion

December 1, 2025

Last Updated

November 22, 2023

Record last verified: 2023-11

Locations

US(1)