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Name of Collaboratory :

 

Adult to Adult Living Donor Transplantation Cohort Study (A2ALL)

 
 

URL :

  http://www.nih-a2all.org/  
 

Collaboratory Status :

 
Operational   Start Date : 2002 End Date : 2009 Info Last Updated : Wed, Dec 1 2010 6:01am PST
 
 

Primary Collaboratory Function :

  Distributed Research Center  
 

Secondary Collaboratory Functions :

   
 

Domain(s) :

  Health and Medical Sciences  
 

Brief Description of the Collaboratory :

 

Liver transplantation is the only cure for end stage liver disease. Each year, almost 4,500 people receive livers from deceased donors, but at least 18,000 individuals in the U.S. remain on the waiting list. Adult to adult living donor liver transplantation (AALDLT), where the donor receives a portion of a whole liver from a living donor, is one remedy that holds promise for saving more lives. Living donor liver transplantation is possible because the liver, unlike any other organ in the body, has the ability to regenerate. The technique of transplanting part of a liver was developed about 15 years ago as a way to transplant a portion of an adult-sized liver in a child. Medical advances have made it possible to do the same for adults. Physicians, patients, and potential donors need information to help them understand the risks and benefits of this relatively new procedure. The primary goal of the Adult to Adult Living Donor Liver Transplantation Cohort Study (A2ALL) is to follow sufficient numbers of patients being considered for and undergoing AALDLT and to provide generalized data on the outcomes.

The Adult to Adult Living Donor Liver Transplantation Cohort Study is comprised of nine geographically distributed transplant centers and the Data Coordinating Center (DCC) at the University of Michigan. The collaborating institutions were brought together through their individual selection by NIH and not through a joint proposal. Transplant centers were selected based on their scientific capabilities and on their experience with the procedure. Once they got together, the study investigators established two main protocols to standardize their research efforts. The retrospective protocol gathers data on transplants and donations that occurred at the centers in the past. Most of this data has now been collected, analyses are underway, and some results have been presented at national meetings. The prospective cohort study, which is scheduled to last until 2009, is collecting data on recipients of living donation and on potential living donor recipients who had a living donor evaluated but did not go through with the living donor transplantation. The evaluation and follow-up of liver donors is a key focus of the study. This includes analysis of the adequacy of informed consent, short- and long-term complications of the donor surgery, and long-term tracking of general health, quality of life, and personal and psychological effects of liver donation.

The research in A2ALL is performed by work groups organized around specific topics. The groups are comprised of individuals with expertise in these areas along with one member from the DCC. Additionally, each transplant center has a study coordinator--often a nurse--who is responsible for gathering, entering, and recording data. Study data are entered into an online system called BioDBx, which was developed at the University of Michigan. Physical samples are tracked by the DCC, but they are stored in an NIH-wide sample repository.

Ancillary studies provide opportunities to use the data and physical samples collected by A2ALL to address other research questions. There studies are conducted by A2ALL in conjunction with one or more non-A2ALL investigators or outside A2ALL by one or more non-A2ALL scientists. Funding for ancillary studies is obtained from sources beyond that provided by A2ALL, such as pharmaceutical companies or NIH.

The A2ALL project is managed by an 11-member Steering Committee (SC), which is comprised of the NIH Program Officer, PIs from each of the nine transplant centers, and the PI for the DCC, who was elected by the other SC members to serve as the Chair. Two of the transplant center PIs serve as co-chairs. The SC runs the project and makes most of the major decisions. During the first year of the project, the SC met face-to-face every eight weeks and held conference calls in between the meetings. Work groups report their progress to the SC. The Project Executive Committee, which consists of the chair and co-chairs, the NIH project officer, and the project biostatistician, deal with the day-to-day activities of A2ALL. This group meets weekly via a conference call.

The DCC developed a web-accessible collaboration environment to facilitate the work of A2ALL. Project documents, meeting schedules, study protocols, measurement instruments, publication guidelines, and a project directory are some of the resources available to A2ALL participants. The SC also uses the system for voting.

 
 

Access to Instruments :

  The DCC developed an online data entry system called BioDBx that each center uses to enter their data. Due to the sensitive nature of the data, access to BioDBx is limited. The only people authorized to access the system are individuals who enter data and the analysts who extract the data and create the analysis fields. Additionally, those who contribute data can only see data for their center.  
 

Access to Information Resources :

  Data Coordination Center (DCC) staff at the University of Michigan developed a collaboration environment for A2ALL using Java and html. Every A2ALL participant has access to the system. Project documents, meeting minutes, and research protocols are some of the resources available. The system also has calendar and voting functions and can keep track of changes in work group membership. The voting utility makes it possible to have secret ballots and to designate a proxy. It can also calculate statistics, such as the percentage of people who voted. The DCC staff added a search engine to the site and developed a keyword index to make it easier to find information as the system grew.  
 

Access to People as Resources :

  An A2ALL project directory is available in the web-based collaboration system.  
 

Funding Agency or Sponsor :

 
American Society of Transplant Surgeons (ASTS)
United States Department of Health and Human Services
National Institutes of Health (NIH)
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Health Resources and Services Administration (HRSA)
 
 
 

Notes on Funding Agencies/Sponsors:
The main funding for A2ALL is provided by the NIDDK through a U01 grant. This mechnanism funds large-scale clinical trials at multiple sites and includes active involvement of the NIH Program Officer, who allocates funds as he/she sees fit. Proposals are submitted in response to Requests for Applications (RFA). The NIDDK originally planned to make awards to 6-8 transplant centers, but support from the ASTS made it possible to fund 9 centers. HRSA funding is used primarily to study quality of life issues in the donors.

 
 
 
Organizations with Funded Participants:
 
Organization name:
Approx # of participants:
Description of organization's role(s):
Columbia University
   Department of Surgery (Columbia)
Transplant center
University of Pennsylvania
   Department of Surgery (U-Penn)
Transplant center
University of California, San Francisco (UCSF)
   Department of Surgery (UCSF)
Transplant center
University of Toronto
   Faculty of Medicine - University of Toronto
Virginia Commonwealth University
   Health System (VCU)
Transplant center
Tufts University
   Lahey Clinic
University of North Carolina
   University of North Carolina at Chapel Hill
      Medical School (UNC)
Transplant center
Northwestern Memorial Hospital
Transplant center
University of California, Los Angeles (UCLA)
   School of Medicine (UCLA)
Transplant center
University of Michigan
   UM School of Medicine
6
Project management and data coordination
University of Colorado at Denver
   University of Colorado Health Sciences Center
Transplant center
University of Pittsburgh
   University of Pittsburg Medical Center
University of Virginia
   University of Virginia Health System
Transplant center
 
TOTAL PARTICIPANTS:
100
 

Notes on Participants/Organizations:
There are approximately 100 people participating in the project.

   
     
 
 

Communications Technology Used :

  The project relies heavily on email and phone conferencing. Video conferencing has proven to be too difficult to employ for 11 distributed sites.  
 

Technical Capabilities :

  Management of technical resources
Security, Access control/login facilities
Support for transition between synch and asynch
Directory of services/experts/resources, Shared calendars
Asynchronous object sharing
Index/metadata, General search capability, Centrally controlled knowledge base, Common file space
Asynchronous conversation
Email
Synchronous object sharing
Application sharing
Synchronous conversation
Audio
 
  Key Articles :    
 

Project-reported performance data :

   
 
         
    
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