Natural History Database Project

AHC Families Requested to Join Critical Natural History Database Study:

AHCF currently funds a grant through MGH/Harvard with Dr Kathryn Swoboda. This Natural History Study is critical for future clinical trials and developing treatments for AHC!

ALL AHC FAMILIES ARE ASKED TO JOIN

Participation is critical for future clinical trials of any treatment developed.

The Natural History Database is being expanded to include the following:

1) Daily Episode log – Tracks your child’s daily episodes, including seizures, dystonia, hemiplegia, duration of episodes, rescue medications and the well-being of the individual that day. The log is intended to be used for a minimum of 4 weeks to better understand the episode pattern.

• This is the link to access the “Daily Episode Log”. If you register to be included in the database or are already in the database when you call Helen, this will become part of the research study, however, it is available for personal use to every family.   
  https://redcap.partners.org/redcap/surveys/?s=JX3Y8RD498 

2) Medication Log – Records all of your child’s current medications, dose, frequency, start and stop date. This will be used to correlate with their episodes and future symptom management. Once completed, the medication log only needs to be updated every 6-12 months unless a major change occurs.

***If you are part of the Natural History Database Study and participate in the Medication and Episode logs you will have access to your child’s histogram of his/her episodes including an updated summary of the daily episode log. You can share it with your physicians for better understanding of your child’s episode pattern. 

3) Flunarizine Survey – Whether you currently use Flunarizine, used it previously but stopped, or have never used it, please consider participating as your input is very important!

This 15 minute survey is available for U.S. families only, since one critical issue is the medication unavailability in the U.S.

You can participate in the Flunarizine survey here whether or not you are utilizing the Episode or Medication logs. 
https://redcap.partners.org/redcap/surveys/?s=XENTFLD4LK  

Flunarizine study letter from Dr Swoboda to AHC Families:
https://documentcloud.adobe.com/link/review?uri=urn:aaid:scds:US:728dc6ba-1810-41cc-b30e-a0b47bee6601

By agreeing to participate in the above studies you are giving your consent to use the information for research purposes and will not receive an individual copy of the study information.

The scientific data management team includes Principal Investigator Kathryn J Swoboda, M.D., Genetics Counselor Jin Yun (Helen) Chen CGC; Genetics student Abbie Burney and Bioinformatics specialist and Data Manager Ren Zhang MPH. The genetic counselor or study coordinators may be reaching out to the families by phone or email for medical history information and to help fill in any missing critical data. This study is voluntary, and your participation is greatly appreciated.