title: The success of traumatic brain injury registry outreach.
abstract: BACKGROUND
  Traumatic brain injury (TBI) affects a large percentage of the US population. Survivors are under-served and recognized. The current mechanisms to contact patients and provide access to needed services appear ineffective.
  
  
  OBJECTIVE
  To review the effectiveness of current TBI outreach using registries.
  
  
  METHODS
  This study reviewed practices of the local TBI programme containing a registry utilized for outreach. Then, using a standardized questionnaire focusing on the TBI registry structure and its follow-up techniques, self-proclaimed registries were contacted and compared across the nation.
  
  
  RESULTS
  Twelve additional TBI programmes were contacted. Eight others had actual registries used for follow-up. The principal mechanism was postal mail. Mail response rates varied from 0.54-25%. Programmes were limited by funding, staffing and access to contact information.
  
  
  CONCLUSIONS
  Postal mail has not been a successful follow-up method for TBI registries. New structuring of letters and alternative contact techniques are needed. Improved access to those individuals with TBI's contact information and funding would likely also aid programmes managing this public health epidemic.
authors.affiliation: Department of Neurology and.
authors.forename: Christopher
authors.initials: C
authors.lastname: Tolleson
authors.forename: Oscar
authors.initials: O
authors.lastname: Guillamondegui
mesh_terms: D022126:Access to Information; D001930:Brain Injuries / Q000453:epidemiology* / Q000534:rehabilitation; D003159:Community-Institutional Relations; D005260:Female; D005500:Follow-Up Studies; D006297:Health Services Accessibility / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination; D008297:Male; D015397:Program Evaluation; D011634:Public Health; D011788:Quality of Life; D012042:Registries; D011795:Surveys and Questionnaires; D017741:Survivors / Q000706:statistics & numerical data; D014481:United States / Q000453:epidemiology