ACPOC's Child Amputee Registry

Hugh Watts, MD

How many children are born with a PFFD each year? If we knew, planning would be easier. How many children loose their limbs due to farm implement accidents or water skiing? If we knew, perhaps we could reduce the number with appropriate political lobbying. Dr. Mervin Letts, of Ottawa, stated that the lack of data made it impossible to formulate preventive policies.

History: The members of ACPOC have always had an interest. Some clinics have had a database for some time, but larger population more reliable. The stumbling block has largely been due to lack of agreement on nomenclature and the complexities in children, where many have combinations of limb deficiencies. Several years ago Dr. Robert Fielden and his son started developing a graphic input. This has be refined. Four years ago this project was agreed to by the Board of ACPOC. At last year's meeting, I presented the project and stated that "The system is ready to proceed" Then came the HIPPA Regulations which required modification of the program to ensure patient confidentiality, and hence the need to clear the project through each participating clinic's Investigational Review Board, or the Canadian equivalent the Ethics Committee.

Goal: To Obtain Reliable Numerical Data on children with limb deficiencies or acquired amputations in order to...

  • Prevent or Decrease the incidence of childhood amputees
  • Facilitate Research

Data Input is of two sorts:

  • Demographic: (text)
    • Age (not date of birth), sex,
    • State/Prov. where living
    • Code for clinic entering the data.
    • Congenital or Acquired Subcategories:
    • Acquired: e.g. Tumor or Traumatic Traumatic (i.e. Cause) Result of Farm equip. Train accidents Recreational activity State/Prov. where accident occurred.
  • Anatomic: (graphic)
    • Each of the bones in the skeleton has a box. (Long bones have 3 boxes: prox, mid & dist 1/3).
    • Missing areas entered by checking appropriate boxes. Option of clicking on the "Transverse" mode where the bones distal to what is checked are automatically deleted.
    • Bones shorter than normal are marked in the separate box marked "• • • s•" beside each of the long bones. The program will have a "translator" which can translate the boxes into one or more of the currently used nomenclature systems. These can change with the times as nomenclature changes, but the actually anatomy will not change.

There is no entry for 'Type of Treatment" (at this time) since that changes frequently with children.

Storage: Selected parts of the data are e-mailed to a central terminal in Los Angeles. While there are fields for entering the child's name, address, record number, these fields will NOT be transmitted in order to protect the child's confidentiality (per HIPPA regulations) but are included in your Excel spread sheet in order to facilitate your own clinic management. The shared data will identify the child only by the identifier for the specific clinic and a sequential number as the clinic enters the data.

Mr. Jan Koreska, the computer engineer who developed the program (or programme" for the Canadians) will store the information in secure facilities at Jantek Inc. in Los Angeles.

Access to the Data:

Each individual clinic will...

  • Have access to their own data
  • Be able to sort & select to facilitate their local data management Research
  • Individuals or clinics who wish to use the combined database for investigational purposes will make a formal application to the Child Amputee Registry Committee, via the Data Manager (currently me) who will refer the request to the ACPOC-CAR committee. When the application is satisfactorily accepted by the committee, the Data Manager will sort the data to:
  • Select out the appropriate categories of patients.
  • Transfer this information to the investigator giving the investigator the names of the clinics who have entered the patients.
  • The investigator will then contact the individual clinics if more information is needed than given on the registry. While this is cumbersome, we have gone this route to comply with the HIPPA regulation.
  • Each clinic has control over their own data.
  • A copy of the final research will be sent to the Registry Committee.
  • The Data Manager will keep a record of all applications for data access.
  • These will be presented to the ACPOC Board at the time of the committee reports at the annual meeting.

Problem Areas:

  1. Patient Confidentiality: HIPPA Regulations
  2. Patients & their parents need to be aware that they are being entered on the Registry and need to give permission to do so, even though the child id not individually identified.
  3. "Ownership" of the information:
  4. • If individuals are not willing to share their information, they should not participate in the Registry.
  5. Reliability of Input:
    • The care with which data is entered will define the value of the output.
  6. Costs:
    • ACPOC has allocated money for the development of the graphic program and the maintenance of the Registry

Of necessity... this is a "Work in Progress" and the program will undoubtedly change as improvements are requested by the participants.

What we need to do now is
... Get Started.