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GRIN registry

grin_database_logo.svg​​​​​​​​In this study we want to investigate clinical and genetic findings of GRIN-related disorders and collect data of affected individuals in a local registry at the Institute of Human Genetics at the University of Leipzig. You have the possibility to view the detailed study information at any time. After registration you can start entering data, pause it at any time and continue later on by using a login and ID.

It is possible to enter data directly, but also to upload documents or reports (e.g. molecular genetic findings, electroencephalography, magnetic resonance imaging, clinical reports, etc.), which will be reviewed by a member of our team and transferred pseudonymously into the registry.
The study has been approved by the Ethics Committee of the University of Leipzig, Germany.

The aims of the study are to establish a registry on GRIN-related disorders, to better understand genotype-phenotype correlations and finally to improve patient care.
This online registry is a collaborative effort with our close collaborators Stephen Traynelis (Emory University, Atlanta), Tim Benke (University of Colorado) and CureGRIN.

Contact

Prof. Dr. Johannes Lemke

Dr. Konrad Platzer
Ilona Krey

​E-Mail: GRIN@medizin.uni-leipzig.de 

How to register

If you are from North or South America or Australia: please contact Jenifer Sargent (study coordinator) at: Jenifer.Sargent@cuanschutz.edu. This chapter of the study is led by neurologists Drs. Tim Benke and Kristen Park (University of Colorado) and Dr. Jennifer Bain (Simons Foundation/Columbia University (https://www.simonssearchlight.org/).

  1. Email Jenifer Sargent your de-identified genetic testing results to make sure you qualify.
  2. After we review your genetic testing results, Jenifer will send you a consent form; sign and return to her.
  3. Jenifer will send you the clinical questionnaire. We are updating the questionnaire and want you to fill out the latest version, even if you've already done it before.
  4. Fill out the questionnaire; you can ask your doctor to help fill it out.
  5. Return the filled-out questionnaire to Jenifer; Jenifer will contact CFERV to conduct functional studies for novel variants.
  6. In the near future, Jenifer will email you for yearly updates. If you haven't heard from us, then please contact us again.

If you are from Europe, Asia, Africa or other: please enroll in the dropdown directly below. This chapter of the study is led by geneticist Dr. Johannes Lemke (University of Leipzig).

  1. Please fill out the online consent form and continue with the online clinical questionnaire; you can ask your doctor to help fill it out.
  2. Please keep your return code and return link to re-access your entry at a later time.
  3. The Leipzig team will contact CFERV to conduct functional studies for novel variants entered in the registry.
  4. In case we have questions on your entry, you may be contacted by an administrator.
  5. In case you have questions, please contact GRIN@medizin.uni-leipzig.de

Both chapters of the registry will be merged, and patients only need to be enrolled at Colorado or Leipzig. If you have already enrolled but have additional novel information, please get in contact and update your entry.​

Philipp-Rosenthal-Str. 55, Haus W
04103 Leipzig
Telefon:
0341 - 97 23840 (Sprechstunde)
Sekretariat:
0341 - 97 23800
Fax:
0341 - 97 23819
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