|Individuals eligible to have an NBS Connect profile include those with a diagnosis of an inborn error of metabolism (IEM). This will be the individual or family member for whom the NBS Connect profile is being created.|
If you are registering for multiple members of one household, you may use the same contact name and email for each family member. However, each family member must be registered separately, and for each you must complete a separate profile.
Please create an account by filling out the information about yourself, (the registrant - not the patient), review the Understanding Your Participation and click the Register button at the bottom of this page to continue.
Review the terms below and scroll to the bottom to create your account.
Understanding your Participation in NBS Connect:
The purpose of the NBS Connect profile is to begin collecting data on diagnosis, treatment, symptoms, outcomes, barriers to care, and quality of life. The collection of this data will help to eliminate gaps in service and improve access to care while establishing best standards of practice for clinical management of each heritable metabolic disorder. The information collected from NBS Connect will also be integral in gaining an understanding of the long term outcomes of many of the less researched and very rare disorders. Having this information is crucial in the process of developing new, improved treatments and management techniques for inborn errors of metabolism. NBS Connect will also provide you with a means of accessing information on clinical trials that the affected individual may be eligible.
How will creating a NBS Connect profile affect me or my child?
This registry has been created specifically for individuals affected by inborn errors of metabolism. Parents and guardians of persons with an inborn error of metabolism may register for them. After registering and creating a profile, you will be contacted periodically with information about new research studies/clinical trials as they become available, as well as upcoming activities and new resources.
Will I need to provide NBS Connect with additional information?
It is important to have the most current information in the database to assist in developing research studies/clinical trials and gaining an understanding of the long term outcomes of inborn errors of metabolism. Therefore, from time to time, we will ask you to update your/your child’s profile. Periodically updating this information will also keep you closely attuned to the status of your/your child’s health.
How is my/my child’s privacy protected?
All of the information you provide to NBS Connect will be maintained in a secure database and any information that could identify you and your family members will not be shared without your expressed approval. All data that is collected through NBS Connect is stored as de-identified information and the database that houses your information is HIPPA compliant.
With your approval you will be contacted when new information becomes available that may impact you and your family; that is, as clinical trial, research studies, and/or new treatments. Based on the information provided in your profile you will be put in contact with the investigators and/or clinicians responsible for the proposed research study/clinical trial or new treatment so that you can decide if you want to learn more. The investigator(s) responsible for the research study/clinical trial and/or new treatment will determine if you or your child is eligible to participate and is responsible to answer any questions about the research study/clinical trial or new treatment.
NBS Connect is committed to issues of privacy and identity, and will continue to take every available precaution to ensure the security of your personal information.
What happens to the information I put in my/my child’s profile, and who has access to it?
The goal of this registry is to make the information you provide searchable, while protecting your identity. De-identified data (information from which all personal identification has been removed) gathered from the profiles will be made available to the NBS Connect community of registered patients, family, friends, caregivers, and researchers, in the hope that this de-identified information will support breakthroughs and clinical trials that could lead to better treatments and care management.
The de-identified information collected and compiled in this registry belongs to the NBS Connect community. SERGG Inc. and its contracted medical professionals (NBS Connect staff) are the guardians of the information contained within the registry. NBS Connect staff will perform the searches for specific questions within the registry and will provide reports back to you and the professional community.
What if I register myself/my child in more than one registry/database?
It is alright if you participate in more than one registry. The goal of NBS Connect is to coordinate with other organizations where possible. NBS Connect will put in place checks and safeguards to help identify duplication of registrants. You and your child’s personal identification that you have provided to NBS Connect will always remain protected.
At any time, you reserve the right to withdraw your information from the NBS Connect registry. Simply contact the NBS Connect Coordinator and your profile will be removed.
As a parent/guardian, how deeply should I involve my child in the registration process?
We believe that it is important for all the people participating in this registry to be as informed as possible. Therefore, if you are a parent or legal guardian of a child under the age of 18, but feel that the child is old enough to understand the idea of the registry, we recommend that you talk with your child and obtain his or her cooperation to participate in this registry. We recommend that any individual over the age of 18 register for him/herself, unless the parent or guardian maintains legal guardianship. Adult individuals with an inborn error of metabolism may still need help to fill out the registration and answer the questions; it’s perfectly alright to provide that help.
If you have any questions regarding the NBS Connect registration process, a NBS Connect Coordinator is available to discuss them with you. Click on the “Ask an expert” link above.
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