The Diagnostic Odyssey for Individuals With Rare Diseases: Leukodystrophies
A disease is considered “rare” if it affects fewer than 200,000 individuals in the US. Uncovering the genetic roots of rare diseases and using those insights to develop new treatments is an ongoing process. Leukodystrophies are a group of rare genetic disorders that affect the central nervous system (CNS). Diagnosis is often delayed due to complex, indistinct symptoms, but recently emerging diagnostic tools and therapies are on the horizon. Living with a rare disease impacts individuals and their family/caregivers both physically and mentally. This activity will explore recent advances in the diagnosis and treatment of leukodystrophies, including current clinical trials. It will also share insights and perspectives from individuals and their family/caregiver(s) and provide strategies to support their well-being.
This activity is provided by OptumHealth Education and UnitedHealthcare.
No commercial support was received for this activity.
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This activity is designed to meet the educational needs of case managers, counselors, nurses, nurse practitioners, pharmacists, pharmacy technicians, physicians, PAs, psychologists, social workers, therapists and other health care professionals (HCPs) who care for individuals with leukodystrophies.
At the end of this educational activity, participants should be able to:
- Describe the diagnostic journey for individuals.
- Explain emerging diagnostic tools and therapies, including clinical trials.
- Discuss the challenges and barriers in the diagnosis, treatment and physical and mental health issues.
- Incorporate individual and caregiver(s) engagement in shared decision-making.
New In 2022!
Podcast: Spotlight on the Caregiver
Following each webcast in our The Diagnostic Odyssey for Individuals With Rare Diseases Webcast series, we will be releasing an accompanying podcast sharing the personal experience from the patient, family or caregiver perspective. These podcasts will provide a more in-depth understanding of the challenges and barriers that patients and their caregivers face as they navigate the complexities of the health care system.
Click here to access the podcast, The Diagnostic Odyssey for Individuals With Rare Diseases: Spotlight on the Caregiver, Leukodystrophies.
Paul J. Orchard, MD
Professor, Division of Pediatric Bone Marrow Transplantation
University of Minnesota
About the presenter
Dr. Paul Orchard is the Medical Director of the Inherited Metabolic and Storage Disease Program and a professor in the Department of Pediatrics, Division of Blood and Marrow Transplant & Cellular Therapy. Dr. Orchard's focus is on the use of hematopoietic stem cell transplantation and other cell therapies for inherited metabolic disorders, with a special interest in the inherited leukodystrophies, mucopolysaccharidoses and osteopetrosis. His clinical research focuses on evolving new and combination therapies to decrease toxicity and improve outcomes, with a particular interest in the use of gene therapy approaches.
Robin K. Blitz, MD
Family Engagement Center / Special Needs Initiative / Complex Health Solutions
Sarah Chart, RN
Rebecca Gleason, RN, CCM
Disclosures of relevant financial relationships
In accordance with the Accreditation Council for Continuing Medical Education's (ACCME) Standards for Integrity and Independence in Accredited Continuing Education, OptumHealth Education (OHE) requires all those in control of educational content to disclose their financial relationships with ineligible companies within the prior 24 months. Ineligible companies are defined by the ACCME as companies whose primary business is producing, marketing, selling, re-selling, or distributing health care products used by or on patients. Individuals must disclose all financial relationships, regardless of the amount, with ineligible companies and regardless of their view of the relevance of the relationship to the education. OHE ensures that the content is independent of commercial bias.
Dr. Paul Orchard has disclosed that he has received grant support from Bluebird Bio and served as a consultant for Orchard Therapeutics and Neurogene.
The remaining activity faculty or planners have no financial relationships to disclose.
All relevant financial relationships have been mitigated.
Method for calculating CE credit
CE credit was calculated by the complexity of content.
In support of improving patient care, this activity has been planned and implemented by OptumHealth Education and UnitedHealthcare. OptumHealth Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE) and the American Nurses Credentialing Center (ANCC), to provide continuing education for the health care team.
Credit designation statements
This activity was planned by and for the health care team, and learners will receive 1.00 Interprofessional Continuing Education (IPCE) credits for learning and change.
The participant will be awarded up to 1.00 contact hour(s) of credit for attendance and completion of supplemental materials.
The American Academy of Nurse Practitioners Certification Program (AANPCP) accepts credit from organizations accredited by the ACCME and ANCC.
This activity is approved for 1.00 contact hour ([0.10] CEU) in states that recognize ACPE.
Attending the full program will earn 1.00 contact hour.
Unique Activity Number(s): JA0007123-9999-22-136-H01-P/T
OptumHealth Education designates this enduring activity for a maximum of 1.00 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
The American Academy of Physician Assistants (AAPA) accepts credit from organizations accredited by the ACCME.
The Commission for Case Manager Certification has approved this program for a maximum of 1.00 clock hours for Certified Case Managers (CCM).
OptumHealth Education is approved by the American Psychological Association (APA) to offer continuing education for psychologists. OptumHealth Education maintains responsibility for this program. 1.00 CE hour.
As a Jointly Accredited Organization, OptumHealth Education is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. OptumHealth Education maintains responsibility for this course. Social workers completing this course receive 1.00 enduring continuing education credits.
Counselors and/or marriage and family therapists
CA: The Board of Behavioral Sciences has deferred CE course approvals to APA and ASWB for its licensees. See those approvals under Psychologists and Social Workers.
Other States: If your state is not specifically listed, nearly all state Counselor and MFT boards accept either APA or ASWB approval, or are reciprocal with other state licensing board approvals, such as those listed below. Check with your board to be sure.
A certificate of attendance will be provided to learners upon completion of activity requirements, enabling participants to register with licensing boards or associations that have not been preapproved for credits. To apply for credit types not listed above, participants should use the procedure established by the specific organization from which they wish to obtain credit.
- 1.00 ACPE - Pharmacists
- 1.00 ACPE - Pharmacy Technicians
- 1.00 AMA - Physicians
- 1.00 ANCC - Nurses
- 1.00 APA - Psychologists
- 1.00 Attendance - General Attendance
- 1.00 CCMC - General - Case Managers
You must be logged into your account to participate in this activity. Get started by clicking the down arrow under “Leukodystrophies” and viewing the content; then follow the prompts at the bottom of the screen. At the end of the activity, you will be able to view, save or print your certificate of participation. A complete listing of all of your activities can be found under “My Account,” “My Activities.”