PatientCrossroads


           

Resources

Family Support Resources

Help relatives get screened using the Pedigree Kit, a valuable tool to help you organize family information and identify family members who need to be screened. SADS conditions are genetically inherited conditions; this means that immediate and extended family members are at risk of having the same condition. Informing family members so they can be screened and treated can save lives.

The Physician Referral Network allows you to search for an Electrophysiologist (EP) near you. An Electrophysiologist is a cardiologist who has had additional training in the electrical system of the heart. Their expertise allows them to more accurately screen for SADS conditions and to provide tailored treatment guidance for each individual affected by a SADS condition. 

Genetic Testing is considered the standard of care for Long QT Syndrome and other SADS conditions. It can help clarify whether someone has the disease (and if they don’t) and help doctors determine treatment. If your family mutation is known other family members can be tested to help “clear” or confirm a diagnosis.

Drugs to avoid list provides comprehensive information on medications that are considered unsafe for people living with SADS conditions. Lists are provided for Long QT Syndrome and Brugada Syndrome.

The Heart of the Matter-Ask the Experts is an innovative program featuring questions regarding Long QT syndrome and other SADS conditions, with answers from some of the world experts.  Physicians, health care providers and affected families can submit their questions here.  The top-ranked questions will be answered by a SADS physician expert. 

SADS Foundation Family Registration Register your family to join the SADS mailing list and receive information on current events and research in the SADS community. While registering let us know what further information you would like to receive and ask any questions you might have.

Information on SADS conditions Sudden Arrhythmia Death Syndromes (SADS) are genetic heart rhythm abnormality conditions. More information on individual SADS conditions can be found here including information on symptoms, diagnosis and treatment options.

Support and Advocacy Groups

SADS Foundation is an international non-profit dedicated to saving the lives and supporting the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.

SADS Connect is a support program for teens and young adults living with a SADS condition.  It is a place for youth to connect, share their stories and learn about upcoming events in the SADS community.

Parent Heart Watch is a national network of parents, families and partners dedicated to reducing Sudden Cardiac Arrest (SCA) in youth.

SCAA identifies and unites survivors, those at risk of sudden cardiac arrest, as well as others who are interested in being advocates on SCAA issues in their communities and beyond. SCAA is dedicated to promoting solutions to prevent sudden cardiac death.

Mended Hearts is a national and community-based non-profit organization with the mission of “Inspiring hope and improving the quality of life for heart patients and their families through ongoing peer-to-peer support”.

Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family.

Genetic Alliance is a leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.

Connected by Hearts was founded in 2011 by a group of young people who had each been through their own heart-related illness and wanted to share these similar experiences. The CBH mission is to provide education, support and networking to young survivors of sudden cardiac arrest and those who have survived or are living with heart related illnesses.

Inspire is an interactive online forum for individuals and families affected by SADS conditions. Members can share their experiences, connect with other families, ask questions and help other members through sharing their insight.

Heart Rhythm Society is a society dedicated to the field of heart rhythm conditions, including SADS conditions. This is a great resource for finding local electrophysiologists (EP) and for learning more about SADS conditions.

PACES stands for the Pediatric and Congenital Electrophysiology Society and is a society that focuses on the care and treatment of young people with SADS conditions. You can locate electrophysiologist that specializes in pediatric care and learn more about SADS conditions in youth.

Research and Clinical Trial Resources

ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted in the United States and around the world. The website is maintained by the National Library of Medicine. You can search for studies by topic and find out more information about a study’s purpose, who may participate, locations and phone numbers for more details.

PubMed is a searchable database of published scientific research articles maintained by the National Library of Medicine. This site is designed for researchers and clinicians and contains journal articles about research in SADS conditions.

Office of Rare Diseases Research (ORDR) website aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.

Global Rare Diseases Patient Registry and Data Repository (GRDR) is a pilot project launched by the Office of Rare Diseases Research (ORDR). The goal is to establish a data repository of de-identified patient data, aggregated in a standardized manner, to enable analyses across many rare diseases and to facilitate various research projects, clinical studies, and clinical trials