Ongoing Clinical Trials for Fragile X

Welcome to the NFXF database for all current clinical trials for Fragile X-associated Disorders. In an effort to help move forward the development of new treatments, the NFXF has asked pharmaceutical companies conducting Fragile X research to provide us with listings of their current studies.

The NFXF cannot vouch for the currency or accuracy of the information, as trials are regularly started, concluded or closed to new participants. However we will stay in close touch with the companies and update the information on a regular basis.

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of the Clinical Trial Sponsors. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to the potential benefits of the study including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. Your name or other personal information have not been shared with the researchers/company/institution. If interested in participating in this research, it is your responsibility to use the contact information in this announcement. Additional opportunities for being part of research studies can be found at research.fragilex.org.
Learn more about Clinical Trials

Clinical Trials 101

This podcast will provide answers to the following questions:

  1. What is a clinical trial?
  2. Why are clinical trials important?
  3. How do clinical trials contribute to the safety of new drugs?
  4. How do clinical trials contribute to the usefulness of new drugs?
  5. What should I expect to be told about a trial and what should I not expect to be able to know?
  6. Can I drop out of a trial at any time?
  7. What about other medications my child might be taking?
  8. Can my child stay on the trial drug when a trial ends and, if not, why not?
  9. When a trial ends, should I expect to be contacted about the results or will I need to find that out on my own?
  10. What is the best way for listeners to learn about your company’s specific trial or trials?

The podcast features Robert Miller, former executive director of the National Fragile X Foundation and representatives of major pharmaceutical companies, including Dr. Paul Wang, Vice President, Clinical Development of Seaside Therapeutics; Dr. Eriene Wasef, Associate Clinical Director of Hoffman-La Roche; and Dr. Marla Hochfeld, Executive Medical Director of Novartis.

Listen Now

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Check out our state-by-state listing of clinical trials being conducted of potential new drugs for the treatment of fragile X syndrome and see if one might be right for you.

Ongoing Clinical Trials

If you are having trouble funding your trip to this clinic, ask the clinic coordinator about financial assistance through the Justin Silver Fly With Me Fund.


Georgia

Emory University

Atlanta, Georgia
Contact: Krista Charen (404) 778-8479 Krista.Charen@emory.edu
Age Range: 14 – 40
Gender:
Condition: FXS
Study: A Safety Study of NNZ-2566 in Patients With Fragile X Syndrome



Illinois

Rush University Medical Center

Chicago, Illinois
Contact: Jamie Chin (312) 942-0025 Jamie_A_Chin@rush.edu
Age Range: 14 – 40
Gender:
Condition: FXS
Study: A Safety Study of NNZ-2566 in Patients With Fragile X Syndrome



Massachusetts

University of Massachusetts Medical School

Worcester, Massachusetts
Contact: Kara Manchester (774) 455-4115 kara.manchester@umassmed.edu
Age Range: 14 – 40
Gender:
Condition: FXS
Study: A Safety Study of NNZ-2566 in Patients With Fragile X Syndrome



New York

Mount Sinai School of Medicine

New York, New York
Contact: Stacey Lurie (212) 241-3692 stacey.lurie@mssm.edu
Age Range: 14 – 40
Gender:
Condition: FXS
Study: A Safety Study of NNZ-2566 in Patients With Fragile X Syndrome



Pennsylvania

Suburban Research Associates

Media, Pennsylvania
Contact: Nikki Thomas (610) 891-7200 Nthomas@suburbanresearch.com
Age Range: 14 – 40
Gender:
Condition: FXS
Study: A Safety Study of NNZ-2566 in Patients With Fragile X Syndrome