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The Laurence-Moon
Bardet-Biedl
Family Network
 



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Conference June 26 - 28, 2014


As we go forward with the PCORI application for the BBS Weight Management Grant, it will be very helpful to have individuals and families with BBS to help us show the importance of this research to PCORI. It will be the first true translational research activity of any size in BBS anywhere in the world. It addresses a key issue in the lives of real people with BBS.

Letters from individuals with BBS need to address the items below especially that this research is focused on patient centeredness and that the BBS community is fully engaged in the research development and design.

What is important for people to say is that we, ( Dr. Haws, the Marshfield Clinic, and BBSFA) have reached out to the BBS community to hear and respond to their needs. It is important for people to state that they are anxious and willing to be part of the activity.
Here are the five criteria in which PCORI evaluates a proposal.

  • Impact of excess weight on the health of individuals and populations or extent to which the proposed study addresses healthy living and weight issues - How do you feel this study will benefit your child or yourself?
  • Potential for the study to improve healthcare and outcomes or to improve patient-centered research methods - How do you feel this study will help your home physician care for your child or yourself?
  • Technical merit
  • Patient-centeredness - this means health care that establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.
  • Patient and stakeholder engagement - What role did you play in the planning? Ideas emailed or facebooked, are you a focus group member?

  • Letters of support from BBS families would best emphasize Patient and Stake holder engagement and patient centeredness.

    Letters that express excitement over being involved in the design, conduct, analysis, and dissemination of the proposed research would be good.

    Letters expressing excitement for rare disease research would also be good. Remember PCORI is “Research Done Differently”. Be sure to incorporate in the letters strong support for weight control management studies in BBS, the importance of rare disease research and the impact this research will have on your personal lives. How hard has it been to control/maintain a healthy weight or lifestyle for your child or your self? Letters are needed from as many persons as possible. It would be wonderful if your child with BBS write a letter or drew a picture sharing that they are excited to be involved! This is opportunity has been created just for them!

    Please address the letters to the "PCORI Review Committee"

    The deadline for submitting the grant is NOVEMBER 1, 2014. Please submit letters as soon as possible to:

    Robert Haws, M.D.
    Marshfield Clinic
    1000 N Oak Ave
    Marshfield, WI 54449

    or fax them to: 1-715-387-5240 attn Dr. Haws
    or email them to: Haws.robert@marshfieldclinic.org


    Thank you so much for your support~ Lets pull together to make this happen!



    CRIBBS
    The Clinical Registry Investigating Bardet Biedl Syndrome needs YOU!

    If you or someone you love has Bardet Biedl Syndrome, (BBS) it is important that you register. BBS is rare, occurring in approximately 1500 people in the USA. We can't have treatment until therapies are developed and trials are completed. We can't have research or trials until we identify those with BBS! The registry will help researchers find a CURE!

    Register here



    Support the Clinic for treatment of Bardet Biedl Syndrome here!


    The CENTER OF EXCELLENCE for Bardet Biedl Syndrome
    is enrolling patients

    Click HERE for more information

    To learn more about Bardet-Biedl Syndrome, visit us at Bardetbiedl.org

    The purpose of this page is to raise public awareness of the
    Laurence-Moon Bardet-Biedl syndrome.

    It serves as a place for parents of LMBBS children,
    LMBBS individuals and their families to meet,
    exchange ideas, and offer support.