November's KDA President's Message
“The Global KD Family: Together Again” is the theme of this year’s annual conference to be held November 9-11 in San Diego and on Zoom. Those of us traveling to San Diego are looking forward to meeting again after a three-year hiatus because of the Covid-19 pandemic. We also look forward to welcoming those many people joining via Zoom. This year’s conference promises to be a unique and important milestone in our mission to find a cure for KD.
On the first day, KDA will host a Patient Focused Drug Development (PFDD) meeting. This meeting will be a major step in documenting the impacts of Kennedy’s Disease on their lives and families. A “Voice of the Patient” report based on the PFDD will be delivered to the Food and Drug Administration (FDA) next Spring. FDA will use this report as a reference during their evaluation of clinical trial results for potential treatments submitted by pharmaceutical companies. Timing of the PFDD is excellent as we will learn at the conference about an upcoming clinical trial from AnnJi, a Taiwanese pharmaceutical company that has been working for several years on a potential treatment.
We also look forward to hearing exciting updates from the SBMA research community, including reports from researchers in the United Kingdom, Italy, Japan, and Australia in addition to the U.S One of the highlights of this year’s conference will be the first-ever award of the Waite-Griffin SBMA Fellowship, a career development opportunity for research into Kennedy’s Disease. Supporting the growth and development of the KD research community is an imporant part of KDA's mission.
Kennedy's Disease Association
2022 KDA Conference - The Global KDA Family Together Again!
The 2022 KDA Conference was held on November 9 -11 at the Holiday Inn Bayside in San Diego and virtually on Zoom. The KDA board would like to thank everyone who attended, presented and planned this event to make it a huge success. Agenda, click here.
The NIH Launches a New Kennedy's Disease Study
New KD Global Registry
We need your help! We’ve heard from patients and researchers about the need for a patient registry for Kennedy’s Disease also known as Spinal and Bulbar Muscular Atrophy - SBMA. We’re pleased to announce that the KD/SBMA registry is now ready for your data!
The KDA is partnering with the Coordination of Rare Diseases at Sanford Health (Sanford CoRDS) to create a global registry of KD/SBMA patients and carriers. This registry will facilitate KD/SBMA research and will be used to recruit patients for clinical trials. Most important, a robust registry will provide a roadmap for investigators and will help them 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. To learn more, click here.
- 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.
- 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.
- KDA’s goal is to make CoRDS the global repository for KD/SBMA patients. The registry is compliant with U.S. Federal law and the European Union’s General Data Protection Regulation.
Please enroll today, either online or by phone: To enroll online, click here or simply call CoRDS at 1-877-658-9192 and they will enter data on your behalf.
The Kennedy Disease Association Board of Directors
THE KDA NEWSLETTER