Participation in Genetic Studies IS of great Need

NOTE: The COVID-19 pandemic may affect the status of the studies listed on this website. Trial recruitment or visits may be postponed, and responses from study coordinators may be delayed. If you are enrolled in a study, your study coordinator will likely reach out to you with any changes. Learn what you need to know about COVID-19People living with MS may hold the key to curing this disease. They, and often their family members, can make a difference in studies of the genes that put people at risk for MS by donating their DNA from blood samples. Understanding the role of genes in MS could revolutionize the way this disease is diagnosed and treated, and ultimately lead to ending MS forever through its prevention.

The National MS Society has been supporting a DNA/Bio-Repository Bank at the University of California at San Francisco (UCSF) for many years. This bank is a shared resource that is feeding many of the genetic breakthroughs happening today. The UCSF Multiple Sclerosis Genetics Group is a founding member of the International MS Genetics Consortium seeking to understand the genetic basis of MS. A large number of participants are needed to accelerate discovery. Please note: this is a nationwide study; and people everywhere can participate without living near or traveling to San Francisco, CA.Two studies listed below are seeking participants. The first seeks people with MS and family members; the second seeks people who have two or more different autoimmune diseases, such as MS and some other autoimmune disease, in their families. Please note: these studies cannot enroll international participants at this time.

Family MS study

The UCSF MS Genetics Group is looking for participation of two types of families: single-case and multi-case families.

• Single-case families are those where only one member is diagnosed with MS. Participation will require a one-time donation of blood from the individual with MS and, if available, a control. The control cannot be a family member but can be a spouse or friend. Preferably the control will be of the same ethnicity and approximately the same age as the individual with MS.

• Multi-case families are those where multiple living, family members have been diagnosed with MS. For these families, the group collects blood samples from all affected family members, unaffected siblings, and both parents of individuals diagnosed with MS. If not all of the individuals requested are able to participate, enrollment is still possible and will be discussed by phone.

African-American MS study

Different populations are being studied to learn why some ethnic groups develop MS at higher rates than others. The MS Genetics Group is asking for the donation of a blood sample from African-American individuals with MS and controls without MS. It is not required, but the participation of certain family members is preferred as well. Read more here. 

Primary Progressive MS

Primary Progressive Multiple Sclerosis (PPMS) is characterized by steadily worsening neurologic function from the onset of the disease. There are still many gaps in the knowledge we have about what differentiates Relapsing-Remitting MS from PPMS and the underlying mechanisms. The MS Genetics Group at the University of California San Francisco is recruiting Primary Progressive MS patients and, if possible, an unrelated control without MS for a research study involving a one-time blood sample donation with the goals of identifying genetic factors driving the course of the disease. With your help, we hope to identify the major genetic factors that play a role in disease presentation and progression. Please note: you do not have to be located in California to participate. Everything for the study can be done remotely and is free of charge to participants.

Participants for either study will be asked to:

• Read and sign a consent and authorization form

• Sign a form to release medical records (only individuals with MS)

• Complete a family information form

• Donate a blood sample (approximately five tablespoons)

At all times, records and other information that is shared with the investigators are handled in a confidential manner. There will be no charges for participation in this study.

To participate or request additional information, please complete this brief intake survey.OR you may contact the bank directly:

UCSF Clinical Coordinator675 Nelson Rising Lane, Suite 235A, Box 3206San Francisco, CA 94158Toll Free Phone: 866-MS-Genes (866-674-3637)Email: [email protected]Website: http://msgenetics.ucsf.edu

Learn more on the Search of MS Genes research.

Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age.

Read more about this study.