NCBRS patient Registry
Enrolling in the NCBRS Patient Registry is a vital and effective way to aid research and treatments for NCBRS patients.
What is a registry?
A registry is a place to store detailed information about individuals who are affected by a specific condition. For rare syndromes such as NCBRS, they are essential in connecting patients and researchers in order to advance knowledge and treatments. Having a registry will allow researchers to develop an official worldwide number of documented cases of NCBRS.
Why should I join the NCBRS patient registry?
As researchers and patients with NCBRS are located all around the world, having a centralized database makes it easier for clinical information to be shared. The register provides an excellent opportunity for families to be involved in research studies and clinical trials. Once questionnaires are completed researchers can compare specific symptoms, identify how the syndrome progresses as well as gain valuable insights into which treatments were most successful. Participation in the registry is completely voluntary. You will not be paid for taking part in the registry.
Who can enroll in the registry?
Any patient from around the world diagnosed with NCBRS is encouraged to enroll. As many individuals with NCBRS will need assistance, parents or legal guardians may submit information on their behalf.
Is my personal information safe?
The information you provide will be stored securely and no unauthorized people will be able to gain access to any information about you. Your information will be “de-identified.” This means your data will be identified by a unique code, not by your (or your child’s) name. Approved scientists, researchers and clinicians will only be allowed to see the de-identified data for their studies.
I don't wish to participate in any research or clinical trials. Should I still register?
Even if you do not wish to participate your information will still be essential for researchers studying NCBRS. Just by registering you are making a difference, your participation helps the researchers gain a better understanding of NCBRS.
When should I update my information?
Keeping your information updated is essential, you will be asked to update your information at least once a year. You can also update your information at any time if there is a significant change.
Are the questionnaires available in other languages?
Currently the questionnaires are only available in English. If you would like assistance in completing the questionnaire please contact us at [email protected].
A registry is a place to store detailed information about individuals who are affected by a specific condition. For rare syndromes such as NCBRS, they are essential in connecting patients and researchers in order to advance knowledge and treatments. Having a registry will allow researchers to develop an official worldwide number of documented cases of NCBRS.
Why should I join the NCBRS patient registry?
As researchers and patients with NCBRS are located all around the world, having a centralized database makes it easier for clinical information to be shared. The register provides an excellent opportunity for families to be involved in research studies and clinical trials. Once questionnaires are completed researchers can compare specific symptoms, identify how the syndrome progresses as well as gain valuable insights into which treatments were most successful. Participation in the registry is completely voluntary. You will not be paid for taking part in the registry.
Who can enroll in the registry?
Any patient from around the world diagnosed with NCBRS is encouraged to enroll. As many individuals with NCBRS will need assistance, parents or legal guardians may submit information on their behalf.
Is my personal information safe?
The information you provide will be stored securely and no unauthorized people will be able to gain access to any information about you. Your information will be “de-identified.” This means your data will be identified by a unique code, not by your (or your child’s) name. Approved scientists, researchers and clinicians will only be allowed to see the de-identified data for their studies.
I don't wish to participate in any research or clinical trials. Should I still register?
Even if you do not wish to participate your information will still be essential for researchers studying NCBRS. Just by registering you are making a difference, your participation helps the researchers gain a better understanding of NCBRS.
When should I update my information?
Keeping your information updated is essential, you will be asked to update your information at least once a year. You can also update your information at any time if there is a significant change.
Are the questionnaires available in other languages?
Currently the questionnaires are only available in English. If you would like assistance in completing the questionnaire please contact us at [email protected].
patient Registry - Latest data
Please click below to see the latest data gathered from the de-identified data submitted through the NCBRS Patient Registry. We thank the participants who have already enrolled which is enabling us to better understand NCBRS. We encourage more participants to enrol so we can gain a better understanding of this rare condition.