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Bronchopulmonary Disease (BPD) Patient Registry (CHILD)

This study is currently recruiting participants.
Verified August 2017 by Lystra Hayden, Boston Children's Hospital
Sponsor:
ClinicalTrials.gov Identifier:
NCT00951366
First Posted: August 4, 2009
Last Update Posted: August 3, 2017
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.
Information provided by (Responsible Party):
Lystra Hayden, Boston Children's Hospital
  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

Information from the National Library of Medicine

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, Learn About Clinical Studies.


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
Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): 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
First Submitted: August 3, 2009
First Posted: August 4, 2009
Last Update Posted: August 3, 2017
Last Verified: August 2017

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