2005 – 2018 CADASIL REGISTRY DATA 2005 – 2008 CADASIL Together We Have Hope Non-Profit 1 www.cadasilfoundation.org
CADASIL Together We Have Hope Non-Profit Organization CADASIL Together We Have Hope was established in the year 2005 and devoted to promoting advocacy, awareness, education, research and support. We are dedicated to enhancing the established communication network among families as well as identifying sources of medical care and social services. We foster advocacy and open communication among all stakeholders as we work collaborative to find a treatment or cure for CADASIL. Vision It is our vision that an environment where affordable diagnosis and up-to-date care is readily available with cost effective treatment for everyone. Values Families, Advocacy, Medical Technology , Innovations, Loyalty, Integrity, Ethical Practices, and Service to Society, which spells out FAMILIES. Advocacy To improve the lives of all we work collaboratively with various organizations, physicians, researchers, and groups to ensure the channels of communication are kept open among all to find a treatment or cure for all. We work closely with a myriad of worldwide researchers push and announce current studies of interest to our CADASIL community. 2 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org
CADASIL TOGETHER WE HAVE HOPE HAS OR IS ASSISTING IN THE FOLLOWING STUDIES : German Study 2014 - The study focuses on the identification of relevant mechanisms of the disease in order to • develop new therapeutic strategies. (Dr. med. Marco Düring) Disability Project 2013 - Orphanet, the European portal and worldwide reference database for rare diseases and • orphan drugs needed a clear description of disabilities related to CADASIL. 2012 - Canadian study by the Heart and Stroke Foundation Centre of Ontario entitled “Evaluating Compromised • White Matter Cerebrovascular Reactivity in Individuals with CADASIL.” (Heart and Stroke Foundation Centre of Ontario, Canada) New York University 2011 - “Natural History of CADASIL: Migraine, Diagnosis and Misdiagnosis.” ( Dr. Swati A Sathe) • University of Rome 2011 - Crossover trial designed to compare one fixed dose of Dabigatran with open-label use of • ASA in patients affected by CADASIL. British Columbia, Canada 2010 - Online CADASIL Survey/Study “How Diet Effects CADASIL.” (Dr. Viera Saly) • University of Nevada 2008 - Effects of dental problems with CADASIL patients (Tiffany Simmons DMD) • CADASIL Study – January – July 2006 - A randomized trial of Donepezil (Aricept, Eisai/Pfizer) • If you wish to recruit patients to participate in a CADASIL Study we work directly with the patient and post the study information on the website. Should any CADASIL patients desire more information or want to participate in a study, they will contact researchers directly. CONTINUING STUDIES • Brian tissue donations: Butler General Hospital (Dr. Stephen Salloway) & Michigan University (Dr. Michael Wang) 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 3
WORLDWIDE PHYSICIAN LOCATOR This locator lists physicians from all around the world who have seen one or more patients with CADASIL. CTWHH continually adds to this list. If you are a patient and are pleased with the doctor who you have seen or are currently seeing for CADASIL, please share their contact information (name, address and telephone number) with us. If you are a doctor and would like to be on this locator, please contact us at info@cadasilfoundation.org. The following countries are represented on the locator : Austria Denmark Holland Saudi Arabia Switzerland Bahrain Finland Hungary Scotland Turkey Belgium Ecuador India Jamaica Vietnam Brazil England Italy Korea Wales Chile Greenland Slovakia Mexico Norway Canada Ireland Lebanon Netherlands Porta Rico Columbia Italy New Zealand Lithuania Philippines Costa Rica Japan Norway South Africa Qatar Cypress Lebanon Portugal Spain St. Croix Dominican Republic Greece Puerto Rico Sweden West Indies Disclaimer: CADASIL Together We Have Hope has made every effort to keep this list current. It is very important for patients and doctors alike to understand that every case of CADASIL is different and patients need to develop a good relationship with their doctors. The patient should have access to appropriate testing facilities, genetic counseling, and prevention medicines for symptoms. 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 4
CADASIL TOGETHER WE HAVE HOPE REGISTRY (DATA) EXAMPLE OF REGISTRY WEB PAGE The registry is a database (collection of information) to which people with this rare condition can contribute their information. All personal information provided to us is kept strictly confidential! Name Please check any symptoms you have or had: E-mail No Symptoms Balance/Gait Dementia Address Depression City Fatigue State/Province Headache Postal Code Memory Country Migraines What test was taken to confirm CADASIL? Migraines with Aura Seizures Your Mutation Strokes Year Diagnosed Swallowing Age of diagnosis Seizures Ethnicity/Race TIA’s Gender Other Symptoms Blood Type Were you first diagnosed with M.S.? Other Medical problems If your doctor knows about CADASIL, please provide doctor's contact information to help others. How did you hear about the website? 5 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org
OVERVIEW OF CADASIL PATIENTS SIGNING REGISTRY 1799 REPORTED WORLDWIDE 1799 1703 1730 1272 1110 796 702 200 2005 2007 2009 2011 2013 2015 2017 2018 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 6
CADASIL PATIENTS GENDER Unreported 4% 6% Males 39% 53% 41% 57 % Females 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 7
CADASIL PATIENTS ETHNICITY/RACE 77% 10% 6% 3% 2% 1% 1% Filipinos Hawaiian Indian Black Hispanic Other Caucasian 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 8
CADASIL PATIENTS LOCATION BY CONTINENT 72% 16% 7% 3% 1% 1% 0% 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 9
CADASIL PATIENTS TESTING REPORT 81% 19% Genetic (blood) Skin Biopsy 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 10
CADASIL PATIENTS AVERAGE AGE OF DIAGNOSIS 29% 27% 16% 10% 9% 6% 1% 2% 0% 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 11
12% OF CADASIL PATIENTS WERE MISDIAGNOSED WITH MULTIPLE SCLEROSIS BETWEEN JULY 2010 – DECEMBER 2018 Unreported 1% Asia 1% 38% South America 1% Males Australia 2% Europe 21% 61% Females North America 75% 1% Other 4% Black 3% Asian 7% Hispanic 85% Caucasian 0% 20% 40% 60% 80% 100% 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 12
CADASIL PATIENTS BLOOD TYPE SEPTEMBER 2010 TO DECEMBER 2018 18% PATIENTS REPORTED THEIR BLOOD TYPE AB- 2% 2% AB+ 2% B- 5% B+ 9% A- 14% O-. 30% A+ 38% O+ 0% 5% 10% 15% 20% 25% 30% 35% 40% 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 13
REPORTED CADASIL SYMPTOMS Seizures 7% Swallowing 9% Asymptomatic 9% Dementia 10% Fatigue 19% Migraines with Aura 22% Balance/Gait 22% Depression 24% Memory 30% Headaches 30% Strokes 31% Tia's 34% Migraines 35% 2005-2018 CADASIL Together We Have Hope Non-Profit - 14 www.cadasilfoundation.org
TOP FIVE CADASIL SYMPTOMS 35% 34% 31% 30% 30% Migraines TIA's Strokes Headaches Memory 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 15
MIGRAINE SYMPTOMS 35% CADASIL PATIENTS REPORTED Males Unreported 1% 77% 38% 9% 7% 4% 1% 1% 1% 61% Females AGE DIAGNOSED Asia 1% 20 - 29 years 7% Australia 7% 30 - 39 years 18% Europe 15% 40 - 49 years 32% 50 - 59 years 30% North America 76% 60 - 69 years 10% South America 1% 70 plus years 3% 16 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org
TIA’s SYMPTOMS 34% CADASIL PATIENTS REPORTED 37% Males 79% 9% 63% 4% 8% Females Other Hispanic Black Caucasian AGE DIAGNOSED Australia 7% 20 - 29 years 7% Europe 22% 30 - 39 years 20% North America 69% 40 - 49 years 32% South Africa 1% 50 - 59 years 28% South America 1% 60 - 69 years 11% 70 plus years 2% 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 17
STROKE SYMPTOMS 31% CADASIL PATIENTS REPORTED Males 78% Females 38% 62% 7% 4% 4% 6% 1% AGE DIAGNOSED 20 - 29 years 6% Asia 30 - 39 years 17% 1% Australia 40 - 49 years 32% 7% Europe 50 - 59 years 31% 15% North America 60 - 69 years 10% 74% South America 70 plus years 4% 3% 2005-2018 CADASIL Together We Have Hope Non-Profit - www.cadasilfoundation.org 18
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