Purpose:
The chILD Liaison Program (CLP) will be developed to provide newly identified
families an immediate and ongoing network to help support the proper flow of
information and assist in the diagnosis and treatment process and beyond.
Secondly, the chILD Liaison Program will provide a conduit for pediatric
pulmonologists to refer patients into the research network to facilitate proper
treatment protocols and capture data to be utilized for the
national/international data registry.
Structure:
The liaison program will be led by a committee chairperson. This
chairperson/director will aid in the dissemination of information and
coordinate consistent messaging throughout the network.
Initially, the U.S. will be divided into ( undecided # ) regions, geographically
associated with at least one research hospital location. Ideally, each region
will include a NEHI, ABCA3, PIG, BO, and Unknown Dx specialist, each
respectively a caregiver of a child with such a disease. The lack of one or more
specialist will not preclude a region from being viable. Over time, the region
participants will strive to add missing specialists as new families are identified.
Each region will appoint a team leader to facilitate communication with the
national director/chILD Board.
In addition to establishing geographic regions, the liaison director will identify
willing national sub-specialist families to aid in more rare diseases or situations
such as transplantation, etc.
The director will make available and update a map for all participants to use as
a quick reference guide.
chILD Board
Director
Regional Teams/
Team Leader
Liaison Responsibilities:
The liaison position is designed to provide assistance to new families struggling
through the very confusing and frightening period when their children are
experiencing diagnosis, treatment, and settling into life with chILD. Ultimately,
it is the Board’s hope that this connection will continue and strengthen beyond
these initial stages and that these families themselves will become part of the
support the chILD Foundation can provide.
(It should be noted that in most circumstances, liaisons are not medical practitioners, and
therefore, should not act as such. Sharing experiences and recommending prudent thought
processes on the part of the families should not act as a substitute for sound medical decisions
made by experienced providers)
Specific duties and responsibilities are listed, but may not be confined to, the
following:
The liaison position requires participants to:
1. Read and sign an agreement outlining responsibilities and duties of the
program and their role.
2. Review and understand current HIPPA statutes to guarantee patient
confidentiality.
3. Agree to serve a one year term to be reviewed by the director and Board
annually for renewal.
4. Make themselves available for contact from newly identified families and
will determine the most efficient and appropriate method for interaction with
each specific family including best times and dates.
5. Assist newly identified families in acquiring proper information related to
home health care equipment, diagnostic procedures, information related to
specific disease states, appropriate healthcare providers, as well as local and
state resources related to care.
6. Contact and meet with research physicians in geographic region and provide
contact information to these facilities.
7. Work with facility staff to provide educational materials related to chILD.
Packets will be provided and may be augmented based upon specific regional
and local needs as determined by the liaisons and physicians.
8. Act as an outreach agent to encourage more professionals and facilities to
work closely with and refer patients to research sites. This may include
presentations on chILD to pediatric pulmonologists within the region based
upon data provided by the Foundation or from referral sources at the research
sites.
9. Team leaders will collect and update information related to:
-Numbers of families coming to the Foundation by region
-Diagnoses of these patients
- Hospital contacts, protocols, and general information related to outreach
- Unmet needs of both liaisons and families
- Research site information
- New local and regional news associated with healthcare delivery
(ex: Medicare, Medicaid, O2 delivery, home healthcare, etc.)
10. Team leaders will gather this information to be shared with the director to
refine and enhance the program. Team leaders may be asked to participate in
conference calls from time to time.
11. Team leaders will be asked to learn interface with new website database in
order to capture information and update it on a regular basis.
12. Director will in turn collect, evaluate, and report progress to the chILD
Foundation board of directors during allocated timeframes established by the
Board.
13. Director will present budgetary needs and strategic direction for upcoming
FY.
14. chILD Board of Directors will have final determination on all aspects of the
liaison program.
Goals:
Year One:
1. Launch Family Liaison Program with at least one representative family in
each of the (undecided # ) regions.
2. Identify and enlist sub-specialist families for rare/unique chILD diagnoses
including transplantation.
3. Train team leaders on website interface to upload and interact with website
database.
4. Develop and disseminate minimum of six information packets to each
research site for the use in educating newly indentified families.
5. Identify and enlist at least one pediatric pulmonologist in every state willing
to move forward with data entry into the registry.
6. Hold 4 quarterly conference calls among team leaders with director to track
progress of goals.
7. Develop list of goals for year 2.
Region 1
Regions and Research Sites
(pending)