The Kennedy's Disease Global Registry
You Can Contribute to the Fight Against Kennedy's Disease
The Kennedy's Disease Association (KDA) has partnered with the Coordination of Rare Diseases at Sanford (CoRDS) to create a global registry for individuals diagnosed with Kennedy's Disease (KD), also known as Spinal and Bulbar Muscular Atrophy (SBMA), as well as carriers of the gene mutation.
The global registry plays an important role in advancing research for KD. It is also used to identify and recruit patients for clinical trials. Most importantly, a robust registry will provide a roadmap for investigators and will help develop improved treatments and potentially a cure for this debilitating rare disease.
Here are a few important things for you to know about the KD/SBMA registry.
- The KD patient registry was developed jointly by NIH and the KDA.
- KD patients and carriers are all urged to enter your data. There is a separate form for carriers.
- Entering data into the registry requires completing the CoRDS profile and two questionnaires, the CoRDS standard questionnaire and the KD/SBMA questionnaire. The entire process should take about 30-45 minutes (less for carriers) and does not have to be done all at one sitting.
- Data can be entered into the registry online, on paper, or by phone with Sanford CoRDS.
- There is no cost for entering your data into the registry.
- To protect your privacy, each participant is assigned a Global Unique Identifier that enables de-identification (anonymization) of the data when shared with researchers approved by Sanford Health’s Scientific Advisory Board. Your name and other identifying information will not be shared. All data is handled with the utmost care and confidentiality.
- Providing your consent to give KDA access to your data will allow us to contact you for studies and clinical trials and help improve our understanding about where to drive our research.
Who Should Register?
- All individuals diagnosed with KD/SBMA
- Female carriers
Why Should You Register?
Your input is essential, whether you’ve been recently diagnosed or have been living with KD for years. By enrolling, you’re actively contributing to the fight against KD/SBMA. A strong and diverse registry strengthens the scientific community’s ability to:
- Track the disease globally
- Accelerate the development of treatments
- Allow for efficient recruitment for clinical trials
- Inform public health and policy decisions related to rare diseases
The KDA aims to establish CoRDS as the global registry for individuals with KD/SBMA. The registry is fully compliant with U.S. federal regulations and the European Union’s General Data Protection Regulation (GDPR), to ensure the highest standards of data privacy and security.
Please enroll today with the Coordination of Rare Diseases at Sanford (CoRDS).
