Patient Registry

With such a rare disease, every patient participant is critical to our success.
Please be part of solving the mystery that is KLS!

The KLS Foundation partnered with public health research firm Beneufit to create a patient registry that will accelerate our collective understanding and treatment of KLS. The registry serves the dual purposes of being a contact database to maintain an accurate list of KLS patients, families and doctors—which will further the Foundation’s ability to support both patients and physicians; and a research database to support scientific research and disease understanding by collecting medical histories and specific disease information.

All patient information will be kept confidential in accordance with HIPAA laws. The KLS patient registry has been approved by a U.S. Institutional Review Board (IRB) and is compliant under the European General Data Protection Regulation (GDPR). The registry was developed and launched with funding raised from individual donors to the KLS Foundation.

The KLS Foundation partnered with public health research firm Beneufit to create a patient registry that will accelerate our collective understanding and treatment of KLS. The registry serves the dual purposes of being a contact database to maintain an accurate list of KLS patients, families and doctors—which will further the Foundation’s ability to support both patients and physicians; and a research database to support scientific research and disease understanding by collecting medical histories and specific disease information.

All patient information will be kept confidential in accordance with HIPAA laws. The KLS patient registry has been approved by a U.S. Institutional Review Board (IRB) and is compliant under the European General Data Protection Regulation (GDPR). The registry was developed and launched with funding raised from individual donors to the KLS Foundation.

Why you should register

Patient to Patient

  • Learn, share and support each other. A KLS “Rolodex” will help identify members of our community and connect patients and caregivers.

Doctor to Patient

  • Discover doctors familiar with KLS.
  • Connect patients to doctors nearby.
  • Educate doctors about what we know and continue to learn about KLS.

Research to Patient

  • Identify and facilitate patients to participate in Stanford Sleep Center research efforts.
  • Inform registry participants about new KLS research studies.
  • Discover trends and common needs of KLS patients.

Having Trouble getting registered?

Download our PDF with tips on how to navigate the patient registry, Watch a recording of the KLSF Registry Introduction & Instruction session or contact us at Registry@KLSFoundation.org for assistance.

Having Trouble getting registered?

Download our PDF with tips on how to navigate the patient registry, Watch a recording of the KLSF Registry Introduction & Instruction session or contact us at Registry@KLSFoundation.org for assistance.

Our Partners

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