JumpStart Resources
The JumpStart program partners with patient groups and families to address gaps by identifying key opinion leaders and introducing new researchers to a disease. The program can help facilitate the development of animal models, establish a patient registry, or organize symposia.
Here, you will find information on external resources that can assist you and support you.
Registries and Natural History Studies
HypoPARAthyroidism patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive HypoPARAthyroidism Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.
The FOXG1 Research Foundation Patient Data Center is a place where both parents and clinicians can come together to help advance research and find a path to a cure. Start your child’s FOXG1 Patient Dashboard by joining the Data Center
The SHANK2 Foundation is dedicated to providing researchers with the data needed to accelerate the development of treatments for SHANK2 disorders while raising awareness of these ultra-rare diseases and providing support to affected families. Learn more about the foundation and sign up for our Patient Registry and Natural History Study (both free of charge to participants).
SynGAP Research Fund (SRF) is excited to partner with Ciitizen on a next generation, digital SYNGAP1 Syndrome Natural History Study.
How it works:
No clinic visits required
Clinical data will be collected from patient’s health records, organized and summarized, free of charge
Caregivers retain full control of patient’s health records
With your consent, clinicians, researchers and biopharma can access anonymized data to aid in research
Available worldwide for patients with medical records in English
Onboarding to the Ciitizen platform requires less than 10 minutes of caregiver time
BPAN Warriors is thrilled to announce that the RARE-X BPAN Federated Data Platform for Patients and Researchers is live.
Having a robust database will allow BPAN Warriors and our global BPAN and NBIA Patient Advocacy Communities to generate more interest from clinicians, researchers and drug developers that we need, in order to help discover a treatment specific for BPAN. This parent-led research foundation, BPAN Warriors, has partnered with Ciitizen for f their groundbreaking BPAN Digital Natural History Study (NHS). The BPAN NHS aims to break down the barriers to patient participation and accessibility in the current natural history study model, while accelerating rare disease drug development. Learn more and sign up here.
JumpStart in the News
Patient Worthy
Patient Worthy’s goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Read more about Patient Worthy and the JumpStart program here