This site became the new ClinicalTrials.gov on June 19th. Learn more.
Show more
ClinicalTrials.gov Menu IMPORTANT: Listing of a study on this site does not reflect endorsement by the National Institutes of Health. Talk with a trusted healthcare professional before volunteering for a study. Read more...
ClinicalTrials.gov Menu IMPORTANT: Talk with a trusted healthcare professional before volunteering for a study. Read more...
ClinicalTrials.gov Menu
Give us feedback

Bronchopulmonary Disease (BPD) Patient Registry (CHILD)

This study is currently recruiting participants.
See Contacts and Locations
Verified August 2017 by Lystra Hayden, Boston Children's Hospital
Sponsor:
Information provided by (Responsible Party):
Lystra Hayden, Boston Children's Hospital
ClinicalTrials.gov Identifier:
NCT00951366
First received: August 3, 2009
Last updated: August 1, 2017
Last verified: August 2017
  Purpose
The goal of the Bronchopulmonary Dysplasia (BPD) Patient Registry is to collect data on individuals with neonatal lung disease to better understand the illness and ultimately improve their care and survival. The Patient Registry was established in 2008 as a means to monitor important trends in the BPD population and to improve understanding, treatment, and survival.

Condition Intervention
Bronchopulmonary Disease Other: Patient Registry

Study Type: Observational [Patient Registry]
Study Design: Observational Model: Case-Only
Time Perspective: Prospective
Target Follow-Up Duration: 21 Years
Official Title: The Center for Healthy Infant Development (Child) Clinic Patient Registry

Resource links provided by NLM:


Further study details as provided by Lystra Hayden, Boston Children's Hospital:

Biospecimen Retention:   Samples With DNA
Buccal swabs

Estimated Enrollment: 500
Study Start Date: June 2008
Estimated Primary Completion Date: January 1, 2099 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
Bronchopulmonary Dysplasia (BPD) Other: Patient Registry
The CHILD Clinic Patient Registry is an observational study designed to identify epidemiologic and genetic factors associated with chronic lung disease in former preterm infants or those with lung disease in the neonatal period.

Detailed Description:
The CHILD Clinic Patient Registry is an observational study designed to identify epidemiologic and genetic factors associated with chronic lung disease in former preterm infants or those with lung disease in the neonatal period.The Patient Registry is used by both clinicians and researchers to better understand BPD and to improve care of individuals with BPD. It is used to assess phenotype and genotype information from former preterm infants with lung disease. Data in the Patient Registry will be analyzed and an regular report of BPD health trends will be created. Using this information, BPD clinicians can address quality improvement initiatives, and examine changing health care issues, including nutritional status, infection control, pulmonary treatment, metabolic and associated genetic variants. The Patient Registry will also play an important role in directing clinical care and in the design of clinical research studies. Researchers use the registry to help in investigating various aspects of neonatal lung diseases like BPD, including medications, diagnostic procedures, and eligibility for clinical trials.
  Eligibility

Ages Eligible for Study:   up to 35 Years   (Child, Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Bronchopulmonary Dysplasia (BPD) patients will be approached during clinical visit and inpatient hospitalizations.
Criteria

Inclusion Criteria:

  • Neonatal respiratory disease
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT00951366

Contacts
Contact: Lystra Hayden, MD, MMSc Lystra.Hayden@childrens.harvard.edu

Locations
United States, Massachusetts
Boston Children's Hospital Recruiting
Boston, Massachusetts, United States, 02115
Contact: Lystra Hayden, MD, MMSc    617-355-1900    Lystra.Hayden@childrens.harvard.edu   
Principal Investigator: Hayden Lystra, MD, MMSc         
Sponsors and Collaborators
Boston Children’s Hospital
  More Information

Responsible Party: Lystra Hayden, Instructor in Pediatrics, Boston Children's Hospital
ClinicalTrials.gov Identifier: NCT00951366     History of Changes
Other Study ID Numbers: X08-07-0335
Study First Received: August 3, 2009
Last Updated: August 1, 2017

Keywords provided by Lystra Hayden, Boston Children's Hospital:
premature birth
neonatal respiratory distress
chronic lung disease
epidemiologicfactors
genetic factors

ClinicalTrials.gov processed this record on September 20, 2017