NFXF Biobank™ FAQ

///NFXF Biobank™ FAQ
NFXF Biobank™ FAQ 2018-10-03T12:25:46+00:00

NFXF Biobank™ Frequently Asked Questions

  • What is the NFXF CBR Program?

    The Collaborative Biomarker Research (CBR) Program is a new initiative funded by the NFXF aimed at accelerating the pace of Fragile X research toward more effective treatments and a cure.
  • What is a biomarker?

    A biomarker is a body chemical that can be measured in order to detect the presence of a disease or disorder. One example of a known biomarker is FMRP, the protein that is absent in people with Fragile X syndrome, but there are potentially many other Fragile X biomarkers that have yet to be discovered. Researchers can use biomarkers for Fragile X disorders to discover new ways to predict, diagnose, and treat these conditions.
  • What is the purpose of the NFXF CBR Program?

    The NFXF CBR Program will establish a bank of biological samples (known as the NFXF Biobank™) that are linked to clinical information in order to help scientists discover more about Fragile X disorders and how to treat them. To achieve this goal, the NFXF CBR program will gather biological samples along with medical, diagnostic, psychological, and family history information from each participant.
  • What’s different or unique about the NFXF Biobank™ from other biobanks?

    The NFXF Biobank™ will store samples from people with Fragile X disorders and eventually their families. These samples will be paired with medical, psychological, and family history information (together called NFXF Research Ready Materials™) so that researchers can discover how biomarkers are linked to certain symptoms, treatment responses, and other laboratory data. The combination of data and samples in the NFXF Biobank™ will provide a unique and powerful tool to advance our understanding of Fragile X disorders.
  • What are NFXF Research Ready Materials™?

    We refer to the combination of Fragile X biological samples and linked clinical information as NFXF Research Ready Materials™. The availability of these unique research materials are attracting interest from scientists and pharmaceutical companies, and will accelerate the pace of breakthroughs in our understanding and treatment of Fragile X disorders.
  • Which institutions are currently involved in the NFXF CBR Program?

    The program is being launched at three Fragile X Clinics: UC Davis MIND Institute, Children’s Hospital Colorado, and Rush University Medical Center. The initial focus will be on collecting samples from individuals with full mutations who have comprehensive clinical data obtained by these clinics. Over time, our plan is to expand the program to include all Fragile X mutation types and to also engage other Fragile X clinics and research groups.
  • Where is the NFXF Biobank™ housed?

    Biological samples will be housed at the laboratory of Dr. Flora Tassone at the UC Davis MIND Institute in Sacramento, California.
  • Who will have access to the data?

    The NFXF CBR Program will make NFXF Research Ready Materials™ available to qualified researchers who want to study Fragile X disorders and other conditions, such as autism, that are linked to these disorders. All requests to use these materials will be reviewed and approved by a committee formed specifically for the NFXF CBR Program. This committee will include expert researchers, clinicians and Fragile X advocates.
  • Will the data be kept confidential?

    Yes. Before samples and data are shared with interested researchers, it will be de-identified, meaning that NFXF Research Ready Materials™ will not include specific information (eg, name) that could be used to identify participants.
  • Will my family have to participate in the NFXF Biobank™ in order to receive care at a Fragile X clinic?

    No. The choice whether or not to participate in this project is completely voluntary and will not affect your medical care in any way.
  • How do I become a participant in the program?

    At this time, participation is limited to individuals with Fragile X full mutations seen at the UC Davis MIND Institute, Children’s Hospital Colorado, and Rush University Medical Center. Our plan is to expand the program to include all Fragile X mutation types and to also engage other Fragile X clinics and research groups.
  • How do I make a donation to help fund this effort?

    The Foundation has committed significant financial resources to the NFXF CBR Program because we believe it is the most effective way to accelerate the pace of Fragile X research. Your donation, large or small, will help the NFXF continue its commitment to research, awareness, and support for individuals and families living with Fragile X. Donate now.
  • I’m a researcher, how do I find out how to access this resource?

    Researchers and pharmaceutical companies interested in learning more about the NFXF Biobank™ and NFXF Research Ready Materials™ can email the Foundation at nfxfcbr@fragilex.org for more information.