ASMD Accelerate

Your child's medical records can contribute to ASMD research

Wylder Nation Foundation and PicnicHealth are working together to advance ASMD (Acid Sphingomyelinase Deficiency) research. PicnicHealth’s innovative research combines de-identified medical record data from volunteers, so Wylder Nation Foundation and other researchers can understand how ASMD progresses over time, as well as how the disease is actually managed and treated in the real-world. We hope this will lead to better care, a better understanding of the disease, and ultimately new treatments.

ASMD Accelerate is initially focused on two specific types of ASMD associated with some form of neurological involvement:

1) Infantile Neurovisceral ASMD (Niemann-Pick Disease Type A)
2) Chronic Neurovisceral ASMD (Niemann-Pick Disease Type A/B)
3) Chronic Visceral ASMD (Niemann-Pick Type B)

Wylder - ASMD A
May 15, 2009 - July 20, 2012

How it works

PicnicHealth does the hard work of collecting, digitizing, and encrypting all your child’s records, so you can see your child’s complete medical history in one click—and contribute to research from the comfort of home.
Sign-up in minutes

Create a PicnicHealth account, consent, and share the names of your child’s doctors in 10 minutes.

We collect your child's records

PicnicHealth compiles medical records for your child, and anonymizes them for research.

Advance medicine

Researchers use anonymized info from a cohort of ASMD patients to make new discoveries.

See A Sample Account

 Why should you enroll in the ASMD Accelerate study?

Purnell - ASMD-A
April 23, 2016 - December 28, 2019
Ease

Contribute to research without leaving your home. No extra treatments, no extra visits, no experiments.

Importance

Understanding the holistic impact of ASMD is critical to advancing research. Real-world evidence from medical records can be essential before launching a clinical trial, as a control-arm in research, determining efficacy, and ultimately approving an experimental treatment.

Impact

Historically, the natural history of ASMD has been difficult to study and has required traveling to centers of excellence to participate in research. With this study, data from your child’s medical records can be used by researchers to learn about what it is like to have ASMD in the real-world.

Better care

If your child is still on their medical journey, ASMD Accelerate can help you better manage their care by centralizing medical records so you and doctors can make the most informed decisions.

Legacy

If your child has passed away, their medical journey can provide valuable insights to researchers and clinicians. Enroll in ASMD Accelerate to carry on their legacy while accelerating ASMD research and improving outcomes for other families.

When it comes to promoting research and developing treatments, there is no more important asset for a rare disease community than patient data.  ASMD Accelerate provides the ASMD community with an easy opportunity to contribute to important research while creating a comprehensive personal electronic health record for each participant at no cost.  It is WIN-WIN for free!

Dr. Justin Hopkin
Chief of Hospital Medicine at the University of Rochester School of Medicine, Board Chair of National Niemann Pick Disease Foundation, ASMD Parent

Your privacy is our top priority

Checks and balances

PicnicHealth uses an independent third party (Institutional Review Board) as an external check to make sure our practices are always ethical.

Security

PicnicHealth puts security first. We protect your child's information with end-to-end encryption and use HIPAA compliant practices.

Privacy

PicnicHealth and Wylder Nation won’t share you or your child's personal information. And no information is shared without your consent first. All medical information is de-identified before sharing with other researchers.

Get all your child’s records in one place

Portable and shareable

Access your child’s records from anywhere. Share your child’s full medical history—including scans and imaging—instantly with your family or doctors.

See what your doctor sees

For those still managing their child’s care, stay informed about your child’s health. When you have access to your child’s full history, you can make the best decisions about their care.

Totally free

For those still managing their child’s care, by participating in ASMD Accelerate, we’ll collect and organize your child’s complete medical history for free.

Collecting and collating medical records on patients with ultra rare diseases such as ASMD presents unique challenges, particularly since the diagnostic journey for these patients can often take many years and the medical records are often disseminated among the many physicians who have been involved along the way. This project supported by Wylder Nation in collaboration with Picnic Health is an incredibly important step to overcoming this barrier – this type of real world, medical information has never been collected and assembled for ASMD, and will be an invaluable resource to better understand this disease and to provide baseline data for future clinical trials.

Dr. Edward H. Schuchman
Department of Genetics & Genomic Sciences, Mount Sinai School of Medicine

We're here to help

Have questions about how it works or PicnicHealth? Let us know and we’ll get back to you by the next day. Email us at [email protected].

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