The FSH Society FSHD Disease Registry

The FSH Society FSHD Self Reporting Patient Registry

The purpose of the FSH Society Patient Registry is to provide a resource by which individuals and families affected by FSHD and researchers, clinicians and health care professionals interested in studying FSHD can be connected with one another. Scientists, clinicians and investigators working on FSHD need access to information concerning FSHD patients and their families.

Recruitment of patients, disease controls, and unaffected controls for research and clinical trials can take quite some time for a research or clinical scientist -- especially for a less prevalent disorder like FSHD. Your participation in the FSH Society Patient Registry will accelerate that process considerably, because you make yourself and your family readily available to researchers, clinicians and companies recruiting patients for FSHD clinical trials.

Patient registries provide the starting material to build the foundation for research knowledge, evidence-based medical practice and useful quality of life and care giving knowledge for patients.

By registering with the FSH Society Patient Registry you are providing basic information about yourself and your interest in FSHD research. This information will be used to facilitate and expedite research and clinical trials and accelerate treatments for FSHD. Having your information on file does not commit you to participate in any research project. Your participation enables the Society to notify you of any research projects which may be of interest to you or your family members. Under no circumstances will your name be released to anyone without your permission. Should a researcher, clinician or health care professional wish to contact you or your family, the Society would first inform you of the project or study, and then if we receive your permission to release your name to the researcher or clinician, we will do so.

The information provided by you and your family members will be secured and pooled with information from other individuals and families with FSHD. This will allow the Society to provide important statistical data to clinicians and researchers. All information provided to researchers will be blinded, coded and will not contain names or personal identifiers.

To sign-up and participate in the FSH Society Patient Registry please download and return the registry form.  Please contact Daniel Paul Perez at (781) 275-7781, or by email at daniel.perez@fshsociety.org with nay questions.  For individuals less than 18 years of age, we request that your parent or guardian provide consent for your participation in the registry. To obtain the FSH Society Patient Registry form please click HERE, download and fill out the form and mail them to the FSH Society.