The Center for Cerebellar Malformations

 

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Genetic Study Forms

 

NOTE:  One consent form and one HIPAA release form* are required of all family members providing dna for this study.  This includes affected child(ren), all siblings and parents.

 

*In addition to the forms discussed above,  an assent form is required from children (mental age 7-11) and adolsecents (mental age 12-17).

 

UCSD Consent forms: Required from all study participants

v  Affected Adult Consent (PDF)-To be signed by legally competent affected participants over 18 years old

v  Unaffected Adult Consent (PDF)-To be signed by unaffected participants over 18 years old (including parents and siblings)

v  Parental Consent (PDF)-To be signed by a parents for each participant in their care under 18 years of mental age included in the study

v  Child Assent (PDF)-To be signed by participants between the mental ages of 5-10 years old

v  Adolescent Assent (PDF)-To be signed by participants between the mental ages of 11-17 years old

 

HIPAA Medical Records Release Form:  Required from all study participants

v  HIPAA Release (PDF)

v  HIPAA Authorizacion (PDF)

 

Patient Medical History Questionnaire:  To be completed for all affected individuals

v  Patient Questionnaire (PDF)

v  Cuestionnario (PDF)

 

Human Subjects Bill of Rights:  To be provided to all study participants

v  Human Subjects Bill of Rights (PDF)

v  Declaracion de los Derechos de Todos los Sujetos Humanos (PDF)

 

 

v    Call for Patients with Joubert syndrome

v    Collecting DNA

v    Establishing Cell Lines

 

Last updated June 26th, 2006