The Family Study of Essential Tremor

Dr. Elan Louis and colleagues at Yale University along with Dr. Lorraine Clark at Columbia University have teamed together for an important research “FASET II,” to try to identify the genes that are responsible for ET. They are calling on the assistance of the ET community to help them complete this groundbreaking research, which at the moment is the largest NIH-funded project of its kind. The help of the ET community is vital.173232

Eligible families would comply with the following criteria:

  1. There are at least 3 affected family members and at least 2 unaffected family members. Each family has at least 5 individuals willing to participate.
  2. One person in your family has been diagnosed by a doctor as having ET (rather than dystonia or Parkinson’s disease, for example).
  3. Your tremor had started by the time you were 50 years old.
  4. Two of your affected relatives, are living and also do not have any accompanying dystonia or Parkinson’s disease. (they do not have to have an official diagnosis)
  5. You have at least two relatives that do not have any ET.
  6. You think you and your family members are willing to donate a blood sample, answer some questionnaires and undergo a videotaped neurological exam during a home visit that will take place in each of your homes. Each interview will last approximate 2-3 hours.
  7. This is a nationwide study, in which the researchers will travel to meet with qualified participants individually. There are no costs associated with your participation and we work around your available schedule. If you are interested, call 203.785.6832 or email tremorgenetics@yale.edu

Tremor Action Network (TAN) was one of two essential tremor organizations that advertised “the genetic study of ET, the Family Study of Essential Tremor (FASET I)” on our website. The study participant feedback was, “This is an exceptionally well-designed study.” Promoting FASET II supports TAN’s mission to spread awareness of tremor by advocating for a cure through research.

TAN Blog Contributor
Kathleen Welker

 

 

7 Comments

  1. Wendy Luba says:

    I would be willing to participate and believe I could get the family members required to participate also. However, I’m not sure if you’d want me, as I am already a part of the study on ET with The Centers for Mendelian Disorders, and I have both ET and OT. I also participate in a Parkinsons Risk study at the NIH and I have a susceptibility gene for Parkinsons. (but do not have PD)

  2. Frank Wingard says:

    I have had DBS and am willing to participate however I can. My tremor began at age 36 and when I could not longer write with pen or pencil with my right (dominant) hand I taught myself to write left handed. I started going to a neurologist about 5 years ago. We tried a variety of meds; none worked very well, although gabapentin helps quite a bit. Even with DBS I still take 1800mg of gabapentin daily. I am still seeing Dr. Fadil to tweak my DBS neurostimulators.

  3. TAN says:

    Wendy and Frank, thank you for your thoughtful comments. Please call 203.785.6832 or email tremorgenetics@yale.edu, citing your interest to participate.

  4. Wynelle Cobb Dale says:

    My siblings are willing to participate in the Family Study of ET. Three of us have symptoms and the two youngest siblings do not yet. I have been on 1200 mgs. of gabapentin daily for more than ten years but my other two siblings with symptoms do not take medication. Four of us live in Georgia; one in Florida.

  5. Chris says:

    Are you still looking for participants?


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