Research Projects and Support Group

Studies

• FACE®-Rare

  FAmily CEntered pediatric Advance Care Planning (pACP) with Families of Children with Rare Diseases (FACE^®-Rare)

  Study Design and Methods of a Dyadic Pilot RCT

  The primary objectives of this pilot trial are:

  • To close a gap in the knowledge of the palliative care needs of families caring for a group of children with rare diseases, who are unable to participate in shared medical decision-making
  • To pilot test one such pACP intervention which may empower families by providing some control in a low control situation and increase families’ capacity to participate in end-of-life decision making
  • The long-term goal is to develop a model of structured pACP and to integrate patient-centered/family-supported health service delivery models nationally and internationally, as standard of care for children with rare diseases

• International Intestinal Failure Registry

  Objective:

  • To create a large international database of children with intestinal failure to characterize their management and outcome and guide the development of best practices and evidence-based management.

  Data Collaboration agreement between Children's National and The Transplantation Society (TTS). Study protocol - Pro00016003

• Management of Suspected Central Line-Associated Bloodstream Infections

  Optimizing Management of Suspected Central Line-Associated Bloodstream Infections (CLABSIs) in Pediatric Intestinal Failure Patients: An Eastern Pediatric Surgery Consortium Multicenter Study

  Objectives are to: 

  • Prospectively ascertain the proportion of blood cultures that become positive after 24 hours.
  • Identify predictors of blood cultures that become positive after 24 hours.
  • Identify predictors of blood cultures that become positive at any time.
  • Describe the time to culture positivity (in hours) among (1) all admissions for rule-out CLABSI, (2) admissions with positive culture within 24 hours, and (3) admissions with positive culture after 24 hours.
  • Describe the CLABSI rate per 1000 catheter days in patients with an indwelling CVL for PN.
  • Describe the speciation of positive blood cultures.

• Short Bowel Syndrome and Eosinophilic Gastrointestinal Diseases

  Objectives are to: 

  • Define the prevalence of EGID in the SBS population by performing a retrospective chart review on a cohort of SBS patients at Children’s National Hospital and to look at associated patient variables with EGID.
  • Quantify the number of eosinophils in each portion of the gastrointestinal tract via retrospective chart review to determine if current EGID consensus criteria also apply to this population of patients.

  Study Number: Pro00016739

Support Group

• For Patients and Families

  Having a good support network is a vital tool in maintaining mental health and wellbeing. The Intestinal Rehabilitation Program is in the process of creating a support group for patients and families. 

  Our objectives are to: 

  • Create a community among families with intestinal failure patients to facilitate communication, to share personal experiences, feelings and coping strategies
  • Help children understand that their problem is not just theirs and that there are other kids with the same problem who have come out ahead and have been able to adapt to their normal daily life with friends at school and home
  • Help families and children reduce the stress caused by the child's illness
  • Help children learn coping strategies to reduce stress