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Request access to data

The Global Angelman Syndrome Registry is a project designed for individuals diagnosed with Angelman syndrome and empower those working towards research and treatments.

You’re welcome to request access to our data. Simply complete the form below and our curation team will be in touch with the relevant data.

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  • Module 1 - Newborn and infancy history

  • 1.1 Did the child reside with you in:

  • 1.1 Newborn (0-1 month)

  • YearsMonths
  • YearsMonths
  • 1.2 Newborn (0-1 month): Health and Behavioural

  • 1.3 Infancy (1-12 months): Temperament

  • 1.4 Infancy (1-12 months): Feeding

  • 1.5 Infancy (1-12 months): Respiratory

  • 1.6 Infancy (1-12 months): Other Health and Behavioural

  • Module 2 - History of diagnosis and results

    To add a new Patient Result File, please click the 'Choose File' button. To add more than one Patient Result File, please click the blue 'Add' button. Once you have selected your files, click the green 'Save' buttons to upload. If you wish to delete a Diagnosis results file, please check the 'mark for deletion' box and click the 'Save and complete later' button.

  • 2.1 History of Diagnosis

  • YearsMonths
  • (Check all that apply)
  • (Check all that apply)
  • 2.2 Individual with Angelman Syndrome Results

  • (Check all that apply)
  • 2.3 Individual with Angelman Syndrome Result Files

  • Drop files here or
    Max. file size: 2 MB.
    • Module 4 - Medical History

      Instructions: To add a new Hospitalisation or Surgery, please click the 'Add' button. If you wish to delete a Hospitalisation or Surgery, please check the 'mark for deletion' box and click the 'Save and complete later' button.

    • 4.3 Hospitalisations and Surgical Procedures

    • (Please indicate approximate number of surgeries if actual number is unknown)
    • 4.4 Details of Hospitalisation/Surgery

    • YearsMonths
    • (e.g. Corrective alignment (toe walking, scoliosis), strabismus
    • Module 6 - Epilepsy

      We’d like to collect more information on your child/adult with Angelman Syndrome’s seizures. If you are able to complete this section, please do so.
      Otherwise, we would be glad to contact your child/adult’s clinician on your behalf if you have provided consent to do this. If the individual has never experienced seizure activity you can move to the next module: Medications and Interventions
      If you require more information, please visit the following website: http://www.ilae.org/

    • 6.0 Seizure History

    • 6.1 Has your child/ adult ever had any of the following seizure types?

    • YearsMonths
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • (eg significant seizure events/ changes)
    • Module 7 - Medications, Interventions and Therapies

      We’d like to collect more information on your child/adult with Angelman syndrome’s current and past medications, as well as current and past therapies. Please record interventions your child/adult is taking as part of a clinical trial in Module 11: Clinical Trials and Studies. If you are able to complete this section, please do so.

    • 7.1a Medications/ Interventions and Therapy Use

    • 7.2 Current medications/interventions

    • Check all that apply
    • YearsMonths
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • Please indicate what time this medication/ intervention is given
      :
       
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • Please indicate what time this medication/ intervention is given
      :
       
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • Please indicate what time this medication/ intervention is given
      :
       
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • Please indicate what time this medication/ intervention is given
      :
       
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • Please indicate what time this medication/ intervention is given
      :
       
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • Please indicate what time this medication/ intervention is given
      :
       
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • Please indicate what time this medication/ intervention is given
      :
       
    • Please indicate units of dosage as a number(e.g. 100, 2.5)
    • 7.3 Medications/Interventions no longer used

    • (Check all that apply)
    • YearsMonths
    • 7.5 Therapy Services

    • (either current or no longer undertaken)
    • (either current or no longer undertaken)
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • YearsMonths
    • YearsMonths
    • (in minutes) E.g. 60 minutes
    • (in minutes) E.g. 60 minutes
    • (if applicable) (months)
    • (e.g. Once a week)
    • (e.g. one hour)
    • Module 11 - Clinical Trials and Studies

    • 11.1 Clinics and Research Studies

    • 11.2 Study Participation

    • 11.3 Clinic attendance

    • Module 2.5 – 6 Month Check Up

      Instructions: Please report on changes to your child’s health and treatment in the last 6 months, and record any details the forms “My Child/ Adult’s Treatment” (bottom left corner).

    • Please enter your child/ adult’s current age, height and weight

    • YearsMonths
    • In the past 6 months has there been any changes in your child/ adult’s

    • In the past 6 months, has your child/ adult

    • Module 3 – Illnesses or Medical Problems

      Instructions: To add a new medical condition that has not been covered by the questions, please provide details in the “Other Medical Conditions” section. To add more than one condition, please click the 'Add' button. If you wish to delete an “Other” condition, please check the 'mark for deletion' box and click the green 'Save' button.

      If you child/ adult has had a hospitalisation or surgery, please record this information in the Medical History and Hospitalisations module.

      If you child/ adult uses or has used medication or therapy, please record this information in the Medications and Interventions module.

      If you child/ adult has undergone any pathology or diagnostic testing that you wish to report, please record this information in the Pathology and Diagnostics module.

    • 3.1 Gastrointestinal Problems - Has your child/adult ever experienced any of the following:

    • YearsMonths
    • YearsMonths
    • YearsMonths
    • 3.2 Throat/ Respiratory Problems - Has your child/adult ever experienced any of the following:

    • 3.3 Musculoskeletal Problems - Has your child/adult ever experienced any of the following:

    • (Check all that apply. Please describe surgery in the Medical History and Hospitalisation module)
    • (Check all that apply. Please describe surgery in the Medical History and Hospitalisation module)
    • (Check all that apply)
    • YearsMonths
    • YearsMonths
    • 3.4 Nutrition and Feeding - Has your child/adult ever experienced any of the following:

    • YearsMonths
    • YearsMonths
    • YearsMonths
    • YearsMonths
    • (Check all that apply)
    • (Check all that apply)
    • (metres/meters – imperial to metric converter: https://www.metric-conversions.org/length/feet-to-meters.htm)
    • (kg - - imperial to metric converter: https://www.metric-conversions.org/weight/pounds-to-kilograms.htm)
    • 3.5 Sensory Problems - Has your child/adult ever experienced any of the following:

    • (Check all that apply. Please describe surgery in the Medical History and Hospitalisation module)
    • 3.6 Neurological Problems - Has your child/adult ever experienced any of the following:

    • YearsMonths
    • 3.6 Neurological Problems - Has your child/adult ever experienced any of the following:

    • (Check all that apply)
    • (Check all that apply)
    • 3.16 Other Medical Conditions

    • YearsMonths
    • Module 4.5 – Communication

    • 4.5.1. Speech,Language and Communication

    • (Check all that apply)
    • (Check all that apply)
    • 4.5.2. Please rate your child/ adult ability to use the following communication methods/systems:

    • 4.5.3. Assisted and Augmented Communication (AAC) Usage

    • MM slash DD slash YYYY
    • (Select all that apply)
    • (Select all that apply)
    • (Select all that apply)
    • (Select all that apply)
    • (Select all that apply)
    • 4.5.4 Assisted and Augmented Communication (AAC) Usage by Others

    • (Select all that apply)
    • (Select all that apply)
    • (Select all that apply)
    • (Select all that apply)
    • Module 5 – Behaviour and Development

      Please answer the following questions about your child/ adult's behaviour and development. Complete this module once when you first join the registry, then every year if your child is 10 years of age or younger, or every 2 years if your child is aged 11 or older.

      *Ability questions: 1 = Unable to perform activity; 3 = Moderate difficulty; 5 = No difficulty **
      **Frequency questions: 1 = Never; 3 = Some of the time; 5 = All the time **

    • 5a.1 Please describe these types of muscle tone

    • 5a.2. Current Development: General Impressions

    • (Select all that apply)
    • (Select all that apply)
    • 5a.3 Other comments

    • 5b.1 Current Development: Gross Motor function

    • (Select all that apply)
    • 5b.2 Gross Motor Function - please describe your child/adult's ability to do the following:

    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (unassisted)
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • 5.3 Fine Motor Function - please describe your child/adult's ability to do the following:

    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • 5b.4 Other comments

    • 5c.1. Adaptive Skills – Dressing - please describe your child/adult's ability to do the following:

    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (eg buttons not lined up, clothes back to front)
    • (Age first performed activity)
      YearsMonths
    • (Age first performed activity)
      YearsMonths
    • (eg warm clothes if cold)
    • (Age first performed activity)
      YearsMonths