Akron Children’s Hospital - Meet the Mito Clinic Team

Episode 81 May 18, 2023 00:36:53
Akron Children’s Hospital - Meet the Mito Clinic Team
Energy in Action by MitoAction
Akron Children’s Hospital - Meet the Mito Clinic Team

May 18 2023 | 00:36:53

/

Show Notes

ENERGY IN ACTION - EPISODE 081

Akron Children’s Hospital - Meet the Mito Clinic Team

 

We are joined by Dr. Iam Rossman, Dr. Stephen Steiner, Dr. Abdu Alali and Nurse Coordinator, Kim Jaaeger— all clinic members from the Akron Children's Hospital Mitochondrial Center. 

 

EPISODE HIGHLIGHTS

 

What is the process for a patient to make an appointment?

We accept physician referrals and self-referrals and we see patients locally and regionally. Once a patient is accepted into the program, an authorization specialist will check benefit coverage and before the initial appointment, we have an internal discussion to formulate a care plan. A patient can expect the initial appointment to take place in as little as two months. 

 

What pre-qualifications are required to be accepted?

We don't require a confirmed diagnosis and we also see patients who are highly suspected to have mitochondrial disorder based on clinical history, laboratory findings and family history. 

 

What is a patient's first visit like and how can they prepare?

Just like most new patient evaluations, it's helpful to come with any data and imaging they have. Before the appointment, we will obtain records from other providers to preview as a team. Patients can expect a pretty long visit that doesn't feel rushed so we can get to know them and their medical history. Patients can make a list in advance of any questions they have along with their goals for the visit.

 

Can you talk about the North American Mitochondrial Disease Consortium Patient Registry and Biorepository (NAMDC) initiative and how patients can get involved?

The overarching goal is to find out more about our patients in order to help them and also future patients. One of the ways we're doing that is through obtaining samples and banking them in the repository so that researchers have access to perform high-quality research. A patient must have an established genetic diagnosis to participate. 

 

How does a bio bank facilitate research and how are samples shared?

We collect samples with the goal to have clinical information tied to DNA available to then do further research and look at a bigger group of patients. Samples aren't associated with a patient's name. Instead they're de-identified, which allows a patient to contribute to our global understanding of a disorder and remain anonymous. 



LINKS & RESOURCES MENTIONED

North American Mitochondrial Disease Consortium Patient Registry and Biorepository

https://www.clinicaltrials.gov/ct2/show/NCT01694940

Active and Enrolling Trials at Akron Children's Hospital

https://www.clinicaltrials.gov/ct2/results?locn=Akron+Children%27s+Hospital&Search=Apply&recrs=b&recrs=a&recrs=f&recrs=d&age_v=&gndr=&type=&rslt=

 

CONNECT WITH AKRON CHILDREN’S HOSPITAL 

Akron Children's Hospital, Mitochondrial Center Website

https://www.akronchildrens.org/departments/Mitochondrial-Center.html

Email Mitochondrial Center

[email protected]

Phone (330) 543-6486

 

CONNECT WITH MITOACTION

Website

https://www.mitoaction.org/

Facebook

https://www.facebook.com/mitoaction

Twitter

https://twitter.com/mitoaction

Instagram

https://www.instagram.com/mitoaction/

LinkedIn

https://www.linkedin.com/company/mitoaction

 

Other Episodes

Episode 26

July 02, 2021 00:52:26
Episode Cover

Giving You the Power to Take Control of Your Healthcare Journey While Moving Mito Research

Meet MitoAction's CEO, Kira Mann and Care3's CEO, David Williams to learn about MitoAction Mobile, our HIPPA compliant, comprehensive care planning and tracking platform...

Listen

Episode 100

December 13, 2023 00:34:23
Episode Cover

LHON Collective

ENERGY IN ACTION - EPISODE 100 LHON Collective   Lissa Poincenoit and Malinda Marsh are the co-founders of the LHON Collective, created to make the...

Listen

Episode 38

December 08, 2021 00:39:09
Episode Cover

Patient Led Trials

  ENERGY IN ACTION - EPISODE 038 Patient Led Trials   Steve Smith is a rare disease advocate, father, and a fierce fighter for rare disease...

Listen