About SMA:
Patient Resources
About SMA: Patient Resources
General Info about SMA
- SMA Foundation's About SMA
The Foundation’s informational page on SMA. Includes an FAQ section, informational materials, and a glossary of SMA-related terms.
- DNA Learning Center's Informational SMA Videos
An SMA educational website from the DNA Learning center. Includes sections on the causes, genetics, diagnosis, current and potential therapies, and daily lives of patients with SMA. Features video interviews, 2-D and 3-D animations, and doctor/researcher narratives.
- Muscular Dystrophy Association's SMA Page
MDA’s overview of SMA, including sections on medical management, clinical trials, and helpful publications.
- Cure SMA's Understanding SMA
Cure SMA’s page on understanding SMA, including FAQ and Quick Facts sections.
- Treat-NMD's SMA Page
The Treat-NMD Neuromuscular Network’s Page on SMA, including information on care standards and patient registries.
SMA Genetics
- DNA Learning Center's SMA Genetics
DNA Learning Center’s What Is SMA page, with video narratives and animations on the cause and inheritance of SMA.
- Cure SMA's The Genetics of SMA
Cure SMA’s overview of basic genetics.
SMA Genetic Testing
- NCBI's Genetic Test Sites
The National Center for Biotechnology Information’s international list of laboratories offering genetic testing for SMA.
- NCBI's Genetic Evaluation and Counseling Sites
The National Center for Biotechnology Information’s international list of clinics offering genetic evaluation and counseling.
- Cure SMA's The Genetics of SMA
Cure SMA’s information on carrier and diagnostic testing.
- Wang et.al. Consensus Statement for Standard of Care in SMA
Consensus Statement for the Standard of Care in SMA by Wang et.al. (2007). Includes information on the diagnostic testing of patients (pp. 1029-1031).
SMA Care
- Cure SMA's Daily Life Page
Includes sections on education, equipment, home life, insurance, mentoring, parenting, recreation, relationships, and travel, as well as a separate section for adults with SMA.
- Cure SMA's Medical Issues Page
Includes sections on Respiratory Care, Physical and Occupational Therapy, Orthopedics, Nutrition, and Palliative Care.
- Columbia University's PT/OT Overview
The Columbia Medical Center’s SMA Program’s overview of the procedures involved in Physical and Occupational Therapies.
- Wang et.al. Consensus Statement for Standard of Care in SMA
Consensus Statement for the Standard of Care in SMA by Wang et.al. (2007). Physicians’ consensus statement for care practices in SMA.
- A Guide to the Consensus Statement for the Standard of Care in SMA
Highlights the sections on managing breathing, eating, and nutrition for patients with SMA.
Prepared by the International Coordinating Committee for SMA Clinical Trials, a guide to the Consensus Statement for Standard of Care in SMA by Wang et.al. (2007).
- Markowitz et.al., SMA: A Clinical and Research Update
A 2012 update on the advances in supportive care of patients with SMA.
Healthcare Providers
- Pediatric Neuromuscular Clinical Research Network for SMA
Network of expert medical centers that specialize in neuromuscular diseases and SMA. The network includes three clinical sites:- Columbia Medical Center's SMA Clinical Center , tel.: 212-342-0263 or 212-342-5767
- Children's Hospital Boston SMA Program , tel.: 617-355-8235 or 857-218-4677
- Children's Hospital of Philadelphia Neuromuscular Program, tel.: 215-590-2763 or 267-426-7215
- MDA in Your Community
Muscular Dystrophy Association’s clinic location feature. Enter your state to find a clinic in your area.
- European SMA
The Foundation’s list of SMA specialists in Europe, as well as a list of Muscular Dystrophy clinicians, many of whom have expertise in SMA.
SMA Therapeutics
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The Foundation’s informational page on the drug development process and the SMA therapeutics pipeline.
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The Foundation's comparative overview of drugs that are in clinical trials currently or approved.
- SMA Therapies
DNA Learning Center’s page on current and potential therapies for SMA. Includes video narratives by clinicians, researchers, and SMA families.
- Antisense Therapy for SMA
DNA Learning Center’s page on a potential therapy. Includes both video narratives by clinicians and researchers and 2-D animations.
Clinical Trials
- SMA Clinical Trials
Through ClinicalTrials.gov, a list of all the SMA clinical trials that are currently recruiting patients and the respective contact information for each trial.
- What You Should Know About Participating in Clinical Trials
The Foundation’s description and overview of the clinical trial process.
Patient Registries
- International SMA Patient Registry
The International SMA Patient Registry, formerly at Indiana University, and supported by Cure SMA. The registry is a resource that aims to connect individuals and families affected by SMA and researchers interested in studying SMA. The registry helps researchers learn more about patients interested in participating in clinical trials.
- Treat-NMD's Global Patient Registries
An international registry for patients with neuromuscular disease, supported by the Treat-NMD Neuromuscular Network. Patients sign up through registries created for specific countries (e.g. International SMA Patient Registry for the United States).
Patient/Family Support & Advocacy
- SMA Advocacy Organizations Worldwide
The Foundation’s global list of SMA advocacy organizations.
- Cure SMA
An SMA advocacy organization with networking, information, and support services for patients and families, including:- Info for Newly Diagnosed Patients
Cure SMA’s page with specific information for recently diagnosed patients and families. - Cure SMA Chapters
The 36 chapters of Cure SMA from across the United States, with instructions to join.
- Info for Newly Diagnosed Patients
- Muscular Dystrophy Association
A nonprofit health organization that provides comprehensive healthcare and support services, advocacy, and education for a number of neuromuscular diseases, including SMA.