SKS
SKS
If we are going to find treatments and a cure for Smith-Kingsmore syndrome, we first have to understand how SKS impacts individuals. Whether you have a definitive (pathogenic) diagnosis of SKS, or a variant of uncertain significance, joining the SKS Global Patient Registry is one of the most significant ways you can help drive research and awareness forward!
A patient registry securely collects information about a diagnosed individual, their symptoms, what treatments and medications have or have not worked, and how things may change over time. This information is kept in a confidential database, and shared only with approved researchers and clinicians in a way that is ‘de-identified’ and aggregated – that is, you cannot link medical information to an individual patient. Your name and other identifying data will never be passed on.
Our patient registry is the best and most secure way to collect comprehensive and accurate data to drive research forward. In addition to supporting research, the Smith-Kingsmore Syndrome Foundation will also share de-identified, aggregated data to give a snapshot of our community (where we’re from, what symptoms are common), so we can understand the experience of Smith-Kingsmore syndrome better.
We are partnering with Sanford CoRDS to create the registry. Sanford CoRDS specializes in enabling rare disease communities to build robust registries that can be used to drive research forward. Join our registry today and help us bring patients, families, and researchers together to gain a better understanding of Smith-Kingsmore syndrome!
What to know before you start:
Please click the CoRDS button below to enroll.
Sanford CoRDS has put many safeguards into place to protect your information and ensure that researchers can use it ethically.
Privacy Protected
Your privacy is protected. All information that you share will be de-identified, meaning your name will not be shared. Instead, your information is assigned a computer-generated ID number. CoRDS keeps your identifiable information in one database and your de-identified questionnaire responses in a separate database.
De-identified data will be shared only with researchers approved by Sanford’s Scientific Advisory Board (SAB) and Smith-Kingsmore Syndrome Foundation. If researchers receive approval to look at the SKS registry, they will onlyl receive de-identified data; no personal data is shared.
Additionally, a researcher might want to do additional research into specific symptoms, such as seizures. They can contact Sanford CoRDS, who would then contact every participant with seizures who also said they would like to participate in additional studies. CoRDS would provide these people with the researcher’s contact information. After that, it would be up to the individual participants to contact the researcher to participate in the additional research. CoRDS will never provide your contact information to anyone.
Importantly, you own your personal data and can withdraw the data from the registry at any time.
Institutional Review Board (IRB)
CoRDS submits every questionnaire to their Institutional Review Board (IRB) for approval. The IRB is a group that reviews the ethics of medical research studies.
HIPAA and GDPR
In addition, this registry complies with the U.S. Health Insurance Portability and Accountability Act (HIPAA) and the European Union General Data Protection Regulation (GDPR).
Informed Consent
Your information is safeguarded by informed consent. As part of the enrollment process, you will be able to read about the registry and then sign a form that indicates you understand what you are doing. For any questions regarding this process, participants can call CoRDS at + 1 877 658 9192 or send an email cords@sanfordhealth.org.
Yes, you can access the registry all over the world with the link provided on our website. International participation is highly encouraged.
You can make updates at any time and they should only take 10-15 minutes. But you should make updates at least once every year, after any significant change in the participant’s health, and immediately after their 18th birthday. If you enrolled the participant in the registry as a minor, their data becomes inaccessible 30 days after their 18th birthday unless and until they are re-enrolled.
~ Bernard Williams